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Rare Disease

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Updated On: Nov 04, 2023
Total Stations: 8
Total Audio Titles: 270

Popular “Rare Disease” Stations

World of Promise A podcast focusing on biotechnology and its promise to transform the lives of people living around the world with rare and serious diseases.

During each episode, we explore a topic related to biotechnology and rare disease by interviewing doctors, scientists, patients, family members of people with rare or serious diseases, and or other experts in biotechnology. The show both highlights the exciting world of biotechnology and the impact it is having on patients while also offering advice and insights for people who have rare or serious diseases as well as their family members or caregivers.
Demystifying NMO Neuromyelitis Optica Spectrum Disorder (NMOSD) and Myelin Oligodendrocyte Glycoprotein antibody disease (MOGAD) are neurological autoimmune diseases that cause blindness and paralysis. While NMOSD and MOGAD are rare diseases, autoimmune diseases are common, and so is finding scientific and medical jargon tricky to understand. In this podcast, The Sumaira Foundation works to simplify the science associated with NMOSD, MOGAD, and related neuro-immune disorders, bringing together patients and experts.
Wait, how do you spell that?: A rare disease podcast Wait How Do You Spell That? is a rare disease podcast produced by Patient Worthy. We talk about issues affecting people rare and underdiagnosed conditions and interview advocates from across the community. We‘re definitely not doctors, and we can‘t give you medical advice. We‘re just here to chat and learn about the diseases that even doctors can‘t seem to spell. Check out the latest in rare disease news at PatientWorthy.com.
Sarc Fighter: Living with Sarcoidosis and other rare diseases This podcast is about battling the disease Sarcoidosis as well as other rare diseases.
‎My rare disease Welcome to 'My rare disease' podcast. This is a platform where I raise awareness of something that affects 1 in 17 people, rare disease. By chatting to patients, health professionals and advocates, we talk about all aspects of rare disease including relationships, mental health and much more. I cannot wait for you to hear some truly inspiring stories from some absolutely amazing people.
‎Hereditary Diseases Pod Hear the stories behind challenging cases in Australian practice. Join clinical experts as they discuss hereditary and often rare diseases and provide practical insights from their experiences to facilitate timely diagnosis and effective management.

Sanofi‐aventis australia pty ltd trading as Sanofi. ABN 31 008 558 807. Talavera Corporate Centre, Building D, 12‐24 Talavera Road, Macquarie Park, NSW 2113. MAT-AU-2200562. Date of Preparation March 2022. POM2200299

Popular “Rare Disease” Playlists


You can find me:

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Autism Parenting This playlist contains all the things I wish I had known when I first started on my autism parenting journey.

You can find me:

theautismdad.com
The Autism Dad Podcast
Breast Cancer Awareness October is Breast Cancer Awareness month, but what things do we still need to know? Sam Hacker Audio Station
Top Mindset Tips for Healing Back Pain A playlists of snippets focusing on the mindset approach of healing back pain. ‎Building Bulletproof Backs
Top Movement Tips for Healing Back Pain A playlist of snippets focusing on movement approach for healing back pain. ‎Building Bulletproof Backs
Top Emotional Tips for Healing Back Pain A playlist of snippets focusing on the emotional approach of healing back pain. ‎Building Bulletproof Backs

All “Rare Disease” Audio

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Episode 29: Mika Newton, CEO at XCures "We work with hundreds of patients a month, helping them understand their own medical history and then tracking what happens to them in the future and providing them and their physicians with decision support and alternative thinking about ways to treat their cancer." Mika Newton, CEO at xCures
Biorasi welcomes Mika Newton to the Few & Far Between podcast to examine how the connection between AI and oncology leads to a more patient-centric world.
Living with an Undiagnosed Condition with Tilly Rose Our first guest for Season 4 of The Rare Disease Podcast for Medics is Tilly Rose, who studied English at Jesus College, Oxford. She started a free platform called that Oxford Girl and published a book of the same name, all centering on facilitating greater access to Oxford University.Tilly achieved all this while living with a chronic, undiagnosed condition, which turned out to be active tuberculosis. In 2022, through her social media activism, she documented her time in hospital and shone the light on the reality of the diagnostic odyssey. Thanks to her sharing personal and raw details of her story, she's gained a following of over 50,000 people who now better understand this phenomenon that is the foundation of most rare disease journeys today.Last year, she signed with the soho agency for her memoir ‘Be Patient’ a warm Darkly comic account of her lifetime behind the hospital curtain.Tilly chats to Lucy about her rare disease journey so far.Find Tilly Rose on instagram @thattillyroseOr read her blog at https://www.thatoxfordgirl.com/Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare
The Rare Youth Monalogues at RareFest 2022 During Rare Fest 2022, Chelsea Wong, Katie Callaghan and Eddie Bartlett, presented three thought provoking monologues which highlighted their experiences living with a rare disease. Facilitated by Lucy McKay, we hear each of their stories and learn more about how they felt presenting and sharing their stories in front of a live audience. You can learn more about the festival via the website here https://www.camraredisease.orgViews, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare
M4RD Returns to Barts for Together Caring for Rare Disease A few months ago, Medics4RareDiseases  partnered with Medscape Education, a global education website for medics, to produce a film with ITN. The programme, that was released on Rare Disease Day (28th February), focusing on the importance of rare disease education. It outlines M4RD and Medscape Education’s joint vision for a ‘one discipline’ approach to rare disease education, that is currently absent from most medical curriculums. Filming took place at Barts and The London School of Medicine and Dentistry, QMUL, where M4RD first started as a student society and features interviews with our very own Dr Lucy McKay, CEO of M4RD, and Christy Rohani-Montez, PhD, Medscape’s Education Global Director of Clinical Strategy. Dan Jeffries, M4RD Trustee, author (and proud owner of two rare conditions) also featured and provided invaluable patient perspective. The film also includes an interview with Sir Professor Mark Caulfield, who heads up the Queen Mary University of London’s Medical School. Sir Professor Caulfield is a long-standing advocate of rare disease research and education and has supported M4RD right from the start.On the day, Lucy interviewed Sir Professor Mark Caulfield, Dr Alexandra Downes and Dr. Melita Irving which are featured in this podcast, along with the audio recording of the ITN film, broadcast on Rare Disease Day 2023.Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare
Episode 28: Dr. Alok Tayi, Founder and CEO of VibeBio “I think one of the key insights and observations you make when you have a child who's sick and you spend time with other families who have sick kids is that we all have a tremendous amount of hope that a potential treatment will come to the forefront for our child.” – Dr. Alok Tayi, Founder and CEO of Vibe Bio
Biorasi welcomes Dr. Alok Tayi to the Few & Far Between podcast to explore the power and determination that patients have when it comes to finding a treatment for rare disease.
Welcome back to Part 2 of our special Few & Far Between podcast episode with guest, Jamie Heywood. Continuing our discussion on the role of engineering in clinical research – and making the world a better place for” id=”1SqA6qPnPg4″ vid=”1SqA6qPnPg4″ id-for-player=”1SqA6qPnPg4″ link=”/listen/episode-27-part-2-jamie-heywood-biotech-engineer-and-entrepreneur-1SqA6qPnPg4/” is-authorized=”false” custom-styles=”margin: 0 24px 24px 0;”>
Episode 27, Part 2: Jamie Heywood, Biotech Engineer and Entrepreneur "Humans have the right to study themselves." – Jamie Heywood, CEO at Alden Scientific
Welcome back to Part 2 of our special Few & Far Between podcast episode with guest, Jamie Heywood. Continuing our discussion on the role of engineering in clinical research – and making the world a better place for people – we'll explore the path to innovation, including data tracking strategies and securing project funding.
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Episode 27, Part 1: Jamie Heywood, Biotech Engineer and Entrepreneur "I think all disciplines go through a process, a journey of being imagined and then becoming a science and then becoming a discipline of engineering." – Jamie Heywood, CEO at Alden Scientific
Biorasi welcomes Jamie Heywood to the Few & Far Between podcast to discuss the critical role engineering plays in clinical research.
M4RD Beyond Borders – Rare Disease Awareness in Zimbabwe In this episode, Zimbabwean Medical Students dive deep into diseases that are rare and neglected in their communities. Listen as they share stories from individuals living with rare diseases and hope that through their lives we can all better understand these diseases and how it affects them. Their aim is that through their stories, we can better understand how we can help individuals socially, mentally, and economically.  They are involved with Child and Youth Care Zimbabwe which are a registered Zimbabwean-based non-profit organisation focused on improving the quality of life of families living with a rare disease. To make this change possible they mobilise resources to support service delivery for people living with rare diseases. Check out their Rare Zim blog here.Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare
How to Support the Supporters, feat. The Courageous Parents Network We speak to Jennifer and Chrissy from the Couraeous Parents Network, one of Patient Worthy's newest partners. CPN is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness. Learn more about what they do and how you can get involved over at their website, CourageousParentsNetwork.org.
Be sure to follow CPN on Facebook!
Not your usual Dermatologist – a DM with Dr Barlow Lucy has a deep and meaningful with Dr Rich Barlow, Dermatology Registrar in the West Midlands and Chair of Trustees for Action for XP. Rich also lives with XP and shares his experiences living with the disease. From universal teenage angst to the incredible challenge of living everyday keeping himself shielded from any UV light. It's a good ol' heart to heart. People who have XP (xeroderma pigmentosum) must take extreme measures to protect their skin from ultraviolet (UV) light. This includes anything that emits UV light, like the sun and some lightbulbs which can damage their skin.Dr Rich and Lucy get into the nitty gritty of how the ubiquitous worries of life intersect with the extraordinary challenges of living with a rare condition. Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare
TAPS Twins – The patient the placenta and the passion for rare This week Melissa speaks to Stephanie Ernst from the organization Taps Support, who has done an absolutely incredible job in getting medics to dare to think rare and to consider TAPS as a potential diagnosis in twin pregnancies. Listen how Melissa and Stephanie explore all things TAPS related and twin related and how parents and clinicians alike can work together to ensure quality care is upheld.Stephanie is a writer, speaker, and advocate for change in how monochorionic twin pregnancies are diagnosed and treated. As a founder of the TAPS Support Foundation, Stephanie’s passion is raising awareness about twin complications. Twin Anemia Polycythemia Sequence, or TAPS as it’s better known, is a rare disease affecting twins sharing a placenta. TAPS in twins has many complications, including a high chance of neurodevelopmental impairment in donor twins, as well as deafness. There is also the potential for death and injury to babies from TAPS that is not diagnosed before birth. Thank you to Stephanie – an 'ervaringsdeskundige’ (expert by experience)Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare
Biorasi welcomes Chris Min to the Few & Far Between podcast for” id=”5cOzY3tHVan” vid=”5cOzY3tHVan” id-for-player=”5cOzY3tHVan” link=”/listen/episode-26-chris-min-cmo-and-interim-ceo-at-longeveron-inc-5cOzY3tHVan/” is-authorized=”false” custom-styles=”margin: 0 24px 24px 0;”>
Episode 26: Chris Min, CMO and Interim CEO at Longeveron, Inc. "Try to find the people who have a really strong background in regulatory science, who really understand the fundamentals, and who you believe can think creatively about the challenges of the cell therapy space." – Chris Min, Longeveron
Biorasi welcomes Chris Min to the Few & Far Between podcast for an inside look at the cell therapy industry and the importance of finding the right team to support your clinical trials.
Give Blood Spread Love (Sickle Cell Part 2) The second part of Lucy's interview with columnist and advocate, Dunstan Nicol-Wilson. The continue to discuss parallels between Dunstan's experiences and the findings of the No One's Listening Report. And also how Dunstan's column for Sickle Cell Disease News drove him into raising awareness for the Give Blood Spread Love campaign. Plus mush more!About Sickle Cell from The Sickle Cell SocietyGive Blood Spread Love donor registration formThe ‘No One’s Listening’ report, which is based on the inquiry’s findings, was jointly published by the APPG on Sickle Cell and Thalassaemia and the Sickle Cell Society, a national charity that supports and represents people affected by sickle cell disorders. Findings discussed in this episode from the enquiry are taken directly from this report.Sickle Cell Sagas by Dunstan Nicol-Wilson for Sickle Cell Disease NewsAbout Blood Transfusions for Sickle Cell DiseaseA must read book 'The Immortal Cells of Henrietta Lacks' by Rebecca Skloot – see why at The Henrietta Lacks FoundationThank you to our 2022 Partners: Alexion, Amicus Therapeutics, Biomarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics, PTC Therapeutics and Sobi.Medics4RareDiseases is a charity registered in England and Wales (1183996). The charity is financially supported by commercial partners. Some of these companies are pharmaceutical companies. The charity works independently from these companies who have no editorial control over this content or any of the charity's activities. Learn more.Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRareViews, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare
A brain tumour that isn’t a brain tumour Melissa speaks with Ailsa Crowe, a content producer at Cavernoma Alliance UK. Ailsa has a symptomatic cavernoma in her right thalamus that cannot be operated on or removed.  Ailsa knows first hand what it's like to be diagnosed with a rare disease and to have to work through the many challenges and obstacles that this brings. In this episode we explore when an individual is told that they have a rare condition such as a cavernoma, it can be a long wait for further input from other specialists. Just because someone has received a diagnosis does not mean that the journey ends there and individuals may require frequent input and coordinated care depending on their unique situation. Primary healthcare providers can always be a point of support for their patients at all time points in the care pathway and should consider the long term impact of a diagnosis such as this. Thank you so much Ailsa for your time and for sharing your story and your expertise to encourage all healthcare professionals to #DareToThinkRare LinksCavernoma Alliance UK https://cavernoma.org.uk/Care Guidelines by Cavernoma Alliance UK https://cavernoma.org.uk/professionals/Thank you to our 2022 Partners: Alexion, Amicus Therapeutics, Biomarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics, PTC Therapeutics and Sobi.Medics4RareDiseases is a charity registered in England and Wales (1183996). The charity is financially supported by commercial partners. Some of these companies are pharmaceutical companies. The charity works independently from these companies who have no editorial control over this content or any of the charity's activities. Learn more.Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare
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Episode 25: Jim Geraghty, Author and Biotech Industry Veteran “We can’t take the orphan drug revolution for granted.“ Biorasi’s Few & Far Between Podcast welcomes Jim Geraghty, author and biotech industry veteran, to discuss the necessity and viability of orphan and rare disease research – for both patients and VC investors alike.
Huntington's In Mind Lucy speaks to Professor Ed Wild, Consultant Neurologist at Queen's Square in London, and Associate Director of UCL Huntingtons Disease Centre. With a short cameo from Jordan at the Huntingtons Disease Association."It may be an incurable disease but it's not an untreatable disease""people living with HD can be helped in many, many ways but really all that is needed is to be there for them and to be willing to listen to what problems people are having, try to figure out what the cause of those problems might be and then try to figure out ways in which you can deal with the causes of their problems."LinksHuntington's Disease Association https://www.hda.org.uk/Huntington's in Mind case studies https://www.hda.org.uk/huntingtonsinmindResources for professionals https://www.hda.org.uk/professionalsGEP explains expansion repeat disorders https://www.genomicseducation.hee.nhs.uk/blog/repeat-after-me-what-are-repeat-expansion-disorders/Prof Ed Wild https://edwild.com/https://www.ucl.ac.uk/ion/people/ed-wildNational Genomic Test DirectoryIf you ever want to see what genetic and genomic testing is available on the NHS and who can request it check this directory outhttps://www.england.nhs.uk/publication/national-genomic-test-directories/Thank you to our 2022 Partners: Alexion, Amicus Therapeutics, Biomarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics, PTC Therapeutics and Sobi.Medics4RareDiseases is a charity registered in England and Wales (1183996). The charity is financially supported by commercial partners. Some of these companies are pharmaceutical companies. The charity works independently from these companies who have no editorial control over this content or any of the charity's activities. Learn more.Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare
Listening to the Sickle Cell community Part 1 Dunstan Nicol-Wilson joins Lucy to discuss all things sickle cell and many things apparently unrelated.About Sickle Cell from The Sickle Cell SocietyThe ‘No One’s Listening’ report, which is based on the inquiry’s findings, was jointly published by the APPG on Sickle Cell and Thalassaemia and the Sickle Cell Society, a national charity that supports and represents people affected by sickle cell disorders. Findings discussed in this episode from the enquiry are taken directly from this report.Sickle Cell Sagas by Dunstan Nicol-Wilson for Sickle Cell Disease NewsThank you to our 2022 Partners: Alexion, Amicus Therapeutics, Biomarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics, PTC Therapeutics and Sobi.Medics4RareDiseases is a charity registered in England and Wales (1183996). The charity is financially supported by commercial partners. Some of these companies are pharmaceutical companies. The charity works independently from these companies who have no editorial control over this content or any of the charity's activities. Learn more.Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast. M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare
Embracing uncertainty when expecting a baby with a genetic condition **** Trigger warning: Baby loss *****Melissa is joined by Sonia Sankoli from SOFT UK – a support organisation for two chromosomal disorders: Trisomy 13 and Trisomy 18 (also known as Edward's Syndrome and Patau's Syndrome).  One size doesn't fit all for families affected by these two conditions.LinksSOFT UK Healthcare Professionals Resources by SOFT UK Antenatal Results and Choices (ARC) is a charity that provides non-directive information and support before, during and after antenatal screening. As well as  training and support to help healthcare professionals to provide the best possible care to every parent who faces a suspected or diagnosed foetal anomaly.Thank you to our 2022 Partners: Alexion, Amicus Therapeutics, Biomarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics, PTC Therapeutics and Sobi.Medics4RareDiseases is a charity registered in England and Wales (1183996). The charity is financially supported by commercial partners. Some of these companies are pharmaceutical companies. The charity works independently from these companies who have no editorial control over this content or any of the charity's activities. Learn more.
Dr Grace, brother Eddie, Addison's Disease and ED Eddie was diagnosed with Addison's Disease during the pandemic, while his older sister was studying medicine. Dr Grace and Eddie join Lucy to talk about Addison's Disease and how a different approach is needed for young people with rare and invisible conditions. Thank you to our 2022 Partners: Alexion, Amicus Therapeutics, Biomarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics, PTC Therapeutics and Sobi.Medics4RareDiseases is a charity registered in England and Wales (1183996). The charity is financially supported by commercial partners. Some of these companies are pharmaceutical companies. The charity works independently from these companies who have no editorial control over this content or any of the charity's activities. Learn more.The Student Voice Prize is open for submissions! Until 16th November. Check out the three questions now and if you need a patient advocate to speak to make sure you apply to patient group pairing scheme.Addisons Self-Help GroupM4RD AmbassadorsGrace's blog about rare disease and the emergency department
Medics in research, advocacy and winning prizes (Student Voice Prize 2022) ft Phil from Beacon and Meagan from CureGRIN Guest host alert! Phil from Beacon joins Lucy to discuss The Student Voice Prize (and so much more) with Meagan Collins, 2nd year medical student in Buffalo, USA. Meagan was runner up of The Student Voice Prize in 2021, winning in the research question category. The essay competition is OPEN NOW so find out why should enter. The Student Voice Prize – find the questions and submitBeacon for Rare Diseases  (formerly known as Findacure) is a UK-based charity that is building a united rare disease community with patient groups at its heart.CureGRIN Foundation websiteRare Disease 101 – learn the basics about 7000 rare diseases without learning about a single rare disease. Free. Authored by the rare disease community. For you.Genomics England's 100K Genomes Project
Episode 72 | Sarc Fighter Regina Gordon shares her battle and a touching poem In Episode 72 of the Sarc Fighter podcast, Regina Gordon, an FSR Advocate shares the story of how sarcoidosis has curtailed her life for decades.  She bravely shares how the disease has spread from her lungs to her skin and lymph nodes and other parts of her body.  But she is not willing to give up.  She's improved her outlook and even earned two college degrees.  Listen in to hear how she is getting it done!


Above:  One of my Elk photos!  And of course, above that Regina and I talking on the podcast!
aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo
FSR Webpage on Financial planning for life with Sarc:  https://www.stopsarcoidosis.org/financial-assistance-support-for-those-living-with-sarcoidosis/
 
#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/
The New FSR Initiative
https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me  [email protected]
Episode 0: What's coming up in season 3? Lucy introduces the newest season of The Rare Disease Podcast 4 Medics with the help of Melissa. We give some teasers about interviews that will be coming to you this season including episodes about supportive care for newborns, mental wellbeing in sickle cell disease, misconceptions in Huntington's disease and a pair of siblings talking about Addison's disease.Thank you to our 2022 Partners: Alexion, Amicus Therapeutics, Biomarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics, PTC Therapeutics and Sobi.Medics4RareDiseases is a charity registered in England and Wales (1183996). The charity is financially supported by commercial partners. Some of these companies are pharmaceutical companies. The charity works independently from these companies who have no editorial control over this content or any of the charity's activities. Learn more.The Student Voice Prize is open for submissions! Until 16th November. Check out the three questions now and if you need a patient advocate to speak to make sure you apply to patient group pairing scheme.LinksThe Association of the British Pharmaceutical IndustryThe ABPI Code of PracticeRAREFest 2022 come watch the Rare MonologuesGrace's blog about rare disease and the emergency department Give Blood, Spread Love, EnglandHuntington's in Mind
Episode 24: Gadi Lachman, President and CEO, TriNetX Can data sharing make the world a better place? Listen in to the latest episode of Few & Far Between. Biorasi CEO, Chris O'Brien, welcomes Gadi Lachman, President and CEO of TriNetX, to discuss real-world solutions for accessing and refining patient data in the clinical trials industry.
Working Toward the Future, Feat. GACI Global and Inozyme Pharma On today's episode, we sit down with two of the co-founders of GACI Global, a nonprofit organization centered around families affected by Generalized Arterial Calcification of Infancy. We also speak with the Vice President of Physician and Patient Strategies at Inozyme Pharma, which is pursuing novel therapeutics for the treatment of abnormal mineralization disorders such as GACI. Learn why close cooperation is so important in the development of treatments for rare conditions and why newborn screening is absolutely vital.
Important Links
GACI Global Homepage
GACI Global Worldwide Walk 2022
Inozyme Pharma Homepage
Inozyme Patient Resources
Inozyme Clinical Trial Information
Episode 71 | Andrew Brandt is fighting back – for all of us. Andrew Brandt has been suffering from sarcoidosis for more than five years.  Lungs. Nervous system.  Skin.  And yet, he runs every day.  And by that, I mean EVERY day.  No matter how bad he feels.  He will reveal his impressive streak during the interview.  In the meantime, he is using programs offered by his company — and his leadership skills, to raise serious money for the Foundation for Sarcoidosis Research. In this episode of the FSR Sarc Fighter podcast, Andrew tells his story, and we will also hear from FSR Development Director Angela Freelander, who will not only thank Andrew — but explain why his gift is so important to the greater good.

 
#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/
Kinevant
www.kinevant.com
www.sarcoidosistrial.com
ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554

The New FSR Initiative
https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me  [email protected]
Episode 23: Dr. Arun Bhatt, Consultant for Clinical Research and Drug Development in India What makes India a smart and viable setting for today’s clinical trials? Join us for the latest episode of Few & Far Between. Biorasi's own Dr. Sagar Patil welcomes one of his early mentors, Dr. Arun Bhatt, for an in-depth discussion into the history and future of clinical research in India.
Episode 70 | Laura Ward thought she had cancer… but it was sarcoidosis. Sarc Fighter Laura Ward has been fighting sarcoidosis for three years.  Her first inclination that something was wrong happened at Yankee stadium, when she had trouble walking up to her seat.  Initial tests showed she had lymphoma.  But upon further review, it was pulmonary sarcoidosis.  That led to issues with prednisone and other life challenges that she shares in Episode 70 of the FSR Sarc Fighter podcast.

Show Notes
#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/
Kinevant
www.kinevant.com
www.sarcoidosistrial.com
ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554

The New FSR Initiative
https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me  [email protected]
The IRSF: 40 Years of Making Connections Thank you for sticking with us while we took an unexpected break! We now return to our regular schedule of helping to share the stories of the rare disease community. In this week's episode, we sit down with Melissa Kennedy and Dominique Pichard of the International Rett Syndrome Foundation (IRSF). To learn more about Rett Syndrome and see how you can get involved, visit RettSyndrome.org.
In Episode 69 of the FSR Sarc Fighter Podcast,  Kinevant CEO Bill Gerhart an” id=”8IMXbnne7au” vid=”8IMXbnne7au” id-for-player=”8IMXbnne7au” link=”/listen/episode-69-kinevant-is-working-on-namilumab-a-potential-new-drug-for-sarcoidosis-8IMXbnne7au/” is-authorized=”false” custom-styles=”margin: 0 24px 24px 0;”>
Episode 69 | Kinevant is working on Namilumab – a potential new drug for sarcoidosis Kinevant is working on a potential new drug to fight sarcoidosis.  Namilumab is the working name for the drug, which — if approved — shows great promise in blocking the body's immune response to the causes of sarcoidosis.
In Episode 69 of the FSR Sarc Fighter Podcast,  Kinevant CEO Bill Gerhart and Director of Patient Advocacy, Rayne Rogers discuss the status of namilumab, and how you as a sarcoidosis patient might want to participate in the stage 2 clinical trial.

Show Notes
www.kinevant.com
www.sarcoidosistrial.com
ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554
Not just hypermobility Vascular Ehlers Danlos Syndrome (Vascular EDS/VEDS) is just one of 13 sub-types of a group of connective tissue disorders called Ehlers Danlos. Due to a deficiency in collagen the walls of blood vessels are prone to dissection, rupture or aneurysm with potentially fatal consequences. However considering the serious complications of vascular EDS its presentation can be subtle and hard to spot. Clare, Jared and Dr Paddy Coughlin explain how patients with vascular EDS may present and what challenges they face. Trigger warning – descriptions of vascular events and bleeding.And here endeth Season 2! Join us in September for the next Season! LinksAccompanying blog with images about vascular EDS. Annabelle’s Challenge aims to promote awareness and medical research into the rare, life-threatening and incurable genetic condition Vascular Ehlers-Danlos Syndrome (Vascular EDS). It was founded in 2013 by Jared and Sarah Griffin, after their daughter Annabelle was diagnosed with Vascular EDS at the age of 3.Please watch this short video where you can see Jared and Sarah talk about Annabelle's diagnosis. As well as hear other families share their stories.Ehlers Danlos Support UK (EDS UK) was set up in 1987 to support, advise and inform those living with the Ehlers-Danlos syndromes.  The charity represents and supports people with all types of EDS.Ehlers Danlos GP Toolkit Orphanet's description of Vascular Ehlers DanlosLoeys-Dietz is another connective tissue disorder that Paddy mentioned. Loyes-Dietz also causes aneurysms as well as other features. Von Willebrand Disorder (VWD) is a common misdiagnosis given to people with vascular EDS. VWD is a clotting disorder unlike vascular EDS which is a connective tissue disorder.  People with VWD have low levels of a protein involved in blood clotting, von Willebrand Factor (VWF) in their blood, or their VWF is dysfunctional, so it takes longer for the clotting process to work and for bleeding to stop.Sponsorship NoticeThis podcast is brought to you by Medics4RareDiseases. M4RD receives sponsorship from commercial companies. In 2022 this includes:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics and SOBI.These companies have no editorial control over this or any other M4RD content. Sponsorship does not equate to endorsement of companies or products. Views expressed during this podcast are personal and don't reflect those of M4RD sponsors.Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD's activities or content of this podcast.
Paramedic to patient Melissa from M4RD interviews Marie who was a healthy and active paramedic until one shift when she suddenly started experiencing pain in her left side (left upper quadrant pain). As a healthcare professional Marie knew likely causes for the sudden pain and knew how to treat it. However the wasn't musculoskeletal or costochondritis or even cholesystitis. It was in fact caused by compression of the duodenum by two arteries. A condition known as Superior Mesenteric Artery Syndrome (SMA – but not spinal muscular atrophy!!)Marie talks about the pursuit of a diagnosis. What it did and didn't give her. How her mental health has been negatively impacted by the "rollercoaster" she has been on and how her family have been affected.As an HCP herself, Marie is pragmatic about the challenges faced by her peers in the NHS and reflects on what she has learned from her own experiences. Which she uses in her role as Teaching Fellow in paramedic Practice at Oxford Brookes University. Find out more about the course here.LinksRead our latest blog A REAL rollercoaster – from paramedic to patientMore info on Superior Mesenteric Artery Syndrome from NORDRenal Nutcracker Syndrome on Orphanet – a related compression syndrome of the left renal vein (LRV) between the superior mesenteric artery (SMA) and the abdominal aortaNicolette Baker suffered from SMA Syndrome for years causing her nausea and she was unable to eat. She went undiagnosed for years and was going for surgical treatment in Germany before she sadly died.Sponsorship NoticeThis podcast is brought to you by Medics4RareDiseases. M4RD receives sponsorship from commercial companies. In 2022 this includes:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics and SOBI.These companies have no editorial control over this or any other M4RD content. Sponsorship does not equate to endorsement of companies or products. Views expressed during this podcast are personal and don't reflect those of M4RD sponsors.Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD's activities or content of this podcast.
What is a genetic counsellor? And some special guests! Lucy and Melissa record live from emotive agency offices in London! Joined by two special guests, Jason and Kelly from the Chinese University of Hong Kong, who have taken a break in the medical studies to see how rare disease education and advocacy is approached in other countries.Part One: Melissa Clasen, Education and Training Officer for M4RD, talks about what a genetic counsellor does as well as who can access this service and how to make that happen. Melissa trained in genetic counselling in South Africa and moved to the UK 4 years ago. Before joining M4RD, Melissa worked at Great Ormond Street Hospital in London. Part Two: Jason and Kelly introduce themselves, what they've been learning, what medical school is like in Hong Kong.LinksNHS information on genetic counsellingBritish Society of Genetic MedicineGenomics Education ProgrammeRare Disease Hong KongUnique – information for families and professionals about rare chromosomal conditionsSponsorship NoticeThis podcast is brought to you by Medics4RareDiseases. M4RD receives sponsorship from commercial companies. In 2022 this includes:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics and SOBI.These companies have no editorial control over this or any other M4RD content. Sponsorship does not equate to endorsement of companies or products. Views expressed during this podcast are personal and don't reflect those of M4RD sponsors.Novartis support M4RD's Mystery Monday.Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD's activities or content of this podcast.
Clinical Trials and Early Access Programmes with Bionical Emas This episode is brought to you by Bionical Emas and M4RD. Naomi from Bionical Emas talks about how her sister received an investigational medicine as a child and how this inspired Naomi to become a Clinical Research Nurse. She now works as Global Advocacy Lead for Bionical Emas – a Clinical Research Organisation (CRO) which combines Clinical Development, Early Access Program (EAP) and Clinical Trial Supply (CTS) services to deliver a unique, seamless approach to bring life-changing medicines around the world.Naomi co-authored a new mini-module on M4RD Learn about clinical trials and early access programmes and if you haven't checked it out already, you will want to after this podcast: learn.m4rd.orgBionical Emas is a sponsor of M4RD in 2022 and this episode and the mini-module were funded by Bionical Emas.To find out how M4RD works with sponsors please visit www.m4rd.org/sponsors
Not your usual hypermobility Vascular Ehlers Danlos Syndrome (Vascular EDS/VEDS) is just one of 13 sub-types of a group of connective tissue disorders called Ehlers Danlos. Due to a deficiency in collagen the walls of blood vessels are prone to dissection, rupture or aneurysm with potentially fatal consequences. However considering the serious complications of vascular EDS its presentation can be subtle and hard to spot. Clare, Jared and Dr Paddy Coughlin explain how patients with vascular EDS may present and what challenges they face. Trigger warning – descriptions of vascular events and bleeding.And here endeth Season 2! Join us in September for the next Season! LinksAccompanying blog with images about vascular EDS. Annabelle’s Challenge aims to promote awareness and medical research into the rare, life-threatening and incurable genetic condition Vascular Ehlers-Danlos Syndrome (Vascular EDS). It was founded in 2013 by Jared and Sarah Griffin, after their daughter Annabelle was diagnosed with Vascular EDS at the age of 3.Please watch this short video where you can see Jared and Sarah talk about Annabelle's diagnosis. As well as hear other families share their stories.Ehlers Danlos Support UK (EDS UK) was set up in 1987 to support, advise and inform those living with the Ehlers-Danlos syndromes.  The charity represents and supports people with all types of EDS.Ehlers Danlos GP Toolkit Orphanet's description of Vascular Ehlers DanlosLoeys-Dietz is another connective tissue disorder that Paddy mentioned. Loyes-Dietz also causes aneurysms as well as other features. Von Willebrand Disorder (VWD) is a common misdiagnosis given to people with vascular EDS. VWD is a clotting disorder unlike vascular EDS which is a connective tissue disorder.  People with VWD have low levels of a protein involved in blood clotting, von Willebrand Factor (VWF) in their blood, or their VWF is dysfunctional, so it takes longer for the clotting process to work and for bleeding to stop.Sponsorship NoticeThis podcast is brought to you by Medics4RareDiseases. M4RD receives sponsorship from commercial companies. In 2022 this includes:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics and SOBI.These companies have no editorial control over this or any other M4RD content. Sponsorship does not equate to endorsement of companies or products. Views expressed during this podcast are personal and don't reflect those of M4RD sponsors.Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD's activities or content of this podcast.
Episode 68 | Profound thoughts from a dying man. A retired businessman had everything, until doctors told him he had only weeks to live.  It was cancer, not Sarcoidosis.  But this man began posting profound thoughts on a forum.  I have met him and talked about his success in business.  I have an amazing amount of respect for what he's accomplished personally as well as professionally.  So when I read his posts I saw pearls of wisdom that apply to those of us fighting sarcoidosis.  I wanted to share some of those thoughts today on the podcast.
Show Notes
Want to learn more about the clinical trial for efzofitimod?  https://atyrpharma.com/patients/clinical-trials/
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
 
The New FSR Initiative
https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me  [email protected]

 
Show Notes
All about the Summit: https://www.st” id=”7CN6pGuWbQN” vid=”7CN6pGuWbQN” id-for-player=”7CN6pGuWbQN” link=”/listen/episode-67-kristi-hedge-begins-her-sarcoidosis-journey-7CN6pGuWbQN/” is-authorized=”false” custom-styles=”margin: 0 24px 24px 0;”>
Episode 67 | Kristi Hedge begins her sarcoidosis journey. Sarcoidosis patient Kristi Hedge is just beginning her journey with Sarcoidosis.  Listen in as she details how she started feeling poorly.  After multiple doctor visits they discovered she had a serious case with Sarc involvement in multiple organs.

 
Show Notes
All about the Summit: https://www.stopsarcoidosis.org/summit-2022/
Contact Mindy: [email protected]
How Efzofitimod works in the body https://atyrpharma.com/programs/atyr1923/
Want to learn more about the clinical trial for efzofitimod?  https://atyrpharma.com/patients/clinical-trials/
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
 
The New FSR Initiative
https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me  [email protected]
Cystic Fibrosis – Annabelle Whiting I really enjoyed talking to Annabelle about her chronic illness Cystic Fibrosis. Annabelle spoke openly about how she got diagnosed with her condition, how illness has changed our outlook on life as well as the importance of psychological support for individuals with a chronic illness. Annabelle has really highlighted how much chronic illness can affect every element of your life including schooling and friendships. Thank you Annabelle for sharing your story.
Episode 22: Dr. Jocelynn Pearl, Senior Scientist at Tune Therapeutics, Host of Lady Scientist Podcast How can DAOs – Decentralized Autonomous Organizations – improve rare disease research? Biorasi's Few & Far Between Podcast welcomes Dr. Jocelynn Pearl, Senior Scientist at Tune Therapeutics and host of the Lady Scientist podcast, to discuss this new connection between clinical trials and cryptocurrency.
Episode 66 | Unveiling Possibilities – All about the upcoming Sarcoidosis Summit from the Foundation for Sarcoidosis Research Every year the Foundation for Sarcoidosis Research presents a summit, where leading experts, patients and caregivers can gather to discuss what's going on with our illness.  It's also a time to learn more about the latest research and to just be with others who get it.  The summit is virtual this year, so you will join on line, but you still get to visit the Exhibit Hall, the plenary sessions, and have Q and A with doctors, researchers and the pharmaceutical companies which are now lining up with exciting research. 
In this episode of the Sarc Fighter Podcast, the FSR Director of Patient Programs, Mindy Buchanan joins me to talk about the highlights of the summit, how you can sign up and how to participate at no cost if you are unable to pay the fee.  Mindy is truly excited about all the summit has to offer, and she will share that enthusiasm during the podcast.

Show Notes
All about the Summit: https://www.stopsarcoidosis.org/summit-2022/
Contact Mindy: [email protected]
How Efzofitimod works in the body https://atyrpharma.com/programs/atyr1923/
Want to learn more about the clinical trial for efzofitimod?  https://atyrpharma.com/patients/clinical-trials/
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
 
The New FSR Initiative
https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me  [email protected]
Episode 65 | aTyr Pharma is getting closer to a potential breakthrough in treating Sarcoidosis aTyr Pharma is launching a new clinical trial for a drug called Efzofitimod, which has thus far shown significant promise as a drug that reduces dependence on prednisone for pulmonary sarcoidosis patients.  In addition, the drug has also produced positive results in helping patients improve their overall condition and quality of life.  In this episode of the Sarc Fighter Podcast, aTyr CEO Dr. Sanjay Shukla joins me to talk about testing to date, and to announce what could be the final stretch of testing and analysis before Efofitimod reaches FDA approval, and would then be available to treat sarcoidosis patients. 
Will this be the first significant breakthrough in 20 years?  Listen in as Dr. Shulka walks us through the successes so far and what must still happen for Efzofitimod to become available for patients.

Show Notes
How Efzofitimod works in the body https://atyrpharma.com/programs/atyr1923/
Want to learn more about the clinical trial for efzofitimod?  https://atyrpharma.com/patients/clinical-trials/
 
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
 
The New FSR Initiative
https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/
The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/
The Mayo Clinic article: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714
Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research <a href="https://w
Episode 64 | The Leadership Team at the Foundation for Sarcoidosis Research with an exciting announcement! In Episode 64 of the Sarc Fighter podcast Mary McGowan, CEO of the Foundation for Sarcoidosis Research and Tricha Shivas, Chief Strategy Officer talk about an exciting new development that will make it easier to patients to find the right doctor, and for doctors to find the right methods to treat Sarcoidosis. 

 
Show notes
The New FSR Initiative
https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/
The Mayo Clinic article: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714
Calvin Harris Blog: https://sarcoidosisnews.com/2022/05/19/im-grateful-that-despite-sacroidosis-i-can-run-my-own-race/
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
Merlin: https://merlin.allaboutbirds.org/
Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also — Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https
Episode 19: Leslie Michelson, Founder and CEO, Private Health Management How do you obtain the best possible patient care available? On this week's Few & Far Between podcast, host Chris O'Brien welcomes patient advocacy innovator Leslie Michelson for a conversation on the importance of patient support, guidance, and healthcare accessibility.
Episode 20: Professor Bertil E. Lindmark MD, PhD, Author and CMO at Galecto, Inc. What do the next 100 years have in store for healthcare and clinical research? Biorasi's Few & Far Between podcast welcomes Professor Bertil E. Lindmark MD, PhD, author and CMO at Galecto, Inc., for an in-depth discussion on the biological revolution and trends in the life sciences.
Episode 18: Karen Petrou and David Brint – BioBonds On this week’s Few & Far Between podcast episode, Biorasi’s CEO, Chris O'Brien, welcomes Karen Petrou and David Brint for an in-depth discussion on BioBonds and how they can jumpstart funding in clinical research for rare disease and other disorders.
Episode 21: Jill Hawkins, Founder and President of the FAM177A1 Research Fund How do you start in building a rare disease foundation? Biorasi's Few & Far Between Podcast Welcomes Jill Hawkins, Founder and President of the FAM177A1 Research Fund, to discuss the impact of an ultrarare disease on her family and the importance of moving forward towards awareness, support, and treatment.
The Importance of Persistence, feat. Patient Advocate Nathan Ehrlich In this episode, we speak with Patient Advocate Nathan Ehrlich about SAMD9L mutations and their connection to a range of conditions, including bone marrow failure disorders, cytopenia and ataxia-pancytopenia syndrome. If you'd like to get in touch with Nathan, you can email him at [email protected]. You can also check out the SAMD9L mutations Facebook support page here.

To learn more about Cancer C” id=”ACBkkmtQIV4″ vid=”ACBkkmtQIV4″ id-for-player=”ACBkkmtQIV4″ link=”/listen/getting-the-support-you-need-feat-cancer-commons-ACBkkmtQIV4/” is-authorized=”false” custom-styles=”margin: 0 24px 24px 0;”>
Getting the Support You Need, feat. Cancer Commons In this episode, we speak with Shelley Frisbie and Dr. Kaumudi Bhawe of Cancer Commons, a non-profit dedicated to providing assistance to advanced cancer patients. We discuss why having a dedicated support team can be so helpful and why every cancer diagnosis is unique.

To learn more about Cancer Commons, visit their website here. You can also connect with them on Facebook, Twitter and LinkedIn.
Learn more about the Pat” id=”3WcWv9XhX8V” vid=”3WcWv9XhX8V” id-for-player=”3WcWv9XhX8V” link=”/listen/the-2022-living-rare-living-stronger-patient-and-family-forum-3WcWv9XhX8V/” is-authorized=”false” custom-styles=”margin: 0 24px 24px 0;”>
The 2022 Living Rare, Living Stronger Patient and Family Forum In this episode, we sit down with Tiffany Sammons and Pam Mace from our partners over at NORD to preview the upcoming Living Rare, Living Stronger Patient and Family Forum. This exciting yearly event brings together patient advocates and their families from around the world.
Learn more about the Patient and Family Forum, taking place June 26 in Cleveland, Ohio, here.
Follow Nord on social media: Facebook Twitter Instagram LinkedIn
Sarcoidosis makes most of us slow down.  For some of us almost to a crawl.  But even while we are slogging along there are ways to be content with our lives.
Here’s my stab at it.” id=”8N78gyh3RS9″ vid=”8N78gyh3RS9″ id-for-player=”8N78gyh3RS9″ link=”/listen/episode-63-the-birds-and-finding-contentedness-8N78gyh3RS9/” is-authorized=”false” custom-styles=”margin: 0 24px 24px 0;”>
Episode 63 | The birds and finding contentedness When sarcoidosis invades your life and rearranges your priorities, it's hard to cope.  Sometimes it's the little things.
Sarcoidosis makes most of us slow down.  For some of us almost to a crawl.  But even while we are slogging along there are ways to be content with our lives.
Here's my stab at it.

Show notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/
The Mayo Clinic article: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714
Calvin Harris Blog: https://sarcoidosisnews.com/2022/05/19/im-grateful-that-despite-sacroidosis-i-can-run-my-own-race/
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
Merlin: https://merlin.allaboutbirds.org/
Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also — Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  <a href="https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFm
Man” id=”jQo3FwZ7R0″ vid=”jQo3FwZ7R0″ id-for-player=”jQo3FwZ7R0″ link=”/listen/episode-61-expectations-and-happiness-with-sarcoidosis-jQo3FwZ7R0/” is-authorized=”false” custom-styles=”margin: 0 24px 24px 0;”>
Episode 61 | Expectations and Happiness with Sarcoidosis Sarcoidosis patients have shared many stories with me here on the Sarc Fighter podcast.  It got me thinking about expectations.  What did we expect from our lives before sarcoidosis?  What do we expect now?  Do we ever expect to get our old lives back — and how hard should we try to get there. 
Managing expectations can be tough and perhaps frustrating.  But it can also be fulfilling.
In Episode 61 of the Sarc Fighter Podcast, I dig in really listen to what some of my guests had to say and look at how they are choosing to manage their lives — and their expectations.
(Be sure to listen at the end for the Full version of Zombie – The official song of the Sarc Fighter Podcast!)
Show notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Juliet's fundraising page: https://www.justgiving.com/fundraising/julietcoffer2
Remember these hashtags for April!  #WhatIsSarcoidosis #MakeItVisible 
Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also — Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me  [email protected]
Episode 62 | Garrie Farrow had troubles wearing her cute shoes. The problem was in her lungs. Garrie Farrow has been fighting sarcoidosis for 15 years, and maybe longer.  It has spread from her lungs to other parts of her body including her ears.  Yet she is still working – and still fighting.  In fact she spends a great deal of time helping other Sarcoidosis patients as well.  In Episode 62 of the Sarc Fighter podcast, Garrie shares the story of how sarcoidosis started out in her lungs, how doctors may have mishandled the early diagnosis and how sarc has had a tragic impact on her family.

Show notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Juliet's fundraising page: https://www.justgiving.com/fundraising/julietcoffer2
Remember these hashtags for April!  #WhatIsSarcoidosis #MakeItVisible 
Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also — Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me  [email protected]
The following is a web-generated transcript of my interview with Garrie.  Please excuse any spelling or punctuation errors.  jc
Welcome back to the Sarc Fighter podcast. And joining me now is Gary Farrow, uh who plays many roles within the foundation for Sarcodosis Research as a volunteer and is coming up on 16 years as a Sarc su
Episode 60 | Jack Boepple’s cardiac sarcoidosis hit him like a linebacker. And he would know. Jack Boepple is a former Boston marathon runner.  A dedicated Cyclist and a fisherman who disappears into the wilderness for a week every year with his canoe and camping supplies.  But even all of that couldn't prevent sarcoidosis from attacking his heart.  In Episode 60 of the Sarc Fighter podcast, Jack shares the story of how sarcoidosis knocked him back more than a few steps — and how he never saw it coming — even when he was in the hospital beating most of the tests.

Jack Cardioversion image
 
 

Show Notes:
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Remember these hashtags for April!  #WhatIsSarcoidosis #MakeItVisible 
Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022
Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also — Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
 
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me  [email protected]
Below is a web generated text version of my interview with Jack Boepple.  Please excuse any spelling errors. 
Welcome back to the Sark Fighter podcast. And joining me now is Jack Boepple Lives in Chicago and he's a fellow SARC fighter. Jack, welcome to the podcast.
Thank
The Unusual Suspects Live Recording Part 2 This is Part 2 of a live recording of The Unusual Suspects: Rare disease in everyday medicine which was hosted by M4RD and The Medical Genetics Section of The Royal Society of Medicine in February 2022. The Royal Society of Medicine event page for The Unusual Suspects 2022In this second part you will hear about:The role of genomics in achieving health equityDr Denise Williams, Consultant Clinical Geneticist, Birmingham Women's and Children's NHS Foundation TrustEnhanced Genetics Services Evaluation ReportGenome UK: The future of healthcareReading recommendation!! The Immortal Life of Henrietta LacksNarrative based medicine and intersectionalityDr Sondra Butterworth, Community Psychologist, RareQoLListen to Sondra talking about inclusivity in Season 1 of the podcast hereThe Whose Voice is it Anyway report that was produced by RareQoL , M4RD & NHS England.Improving knowledge and understanding of rare disease: Lessons learned from an an unusual heart attackDr David Adlam, Associate Professor of Acute and Interventional Cardiology, University of LeicesterListen to the episode featuring Dave and BeatSCAD called Not your usual heart attack herePutting the ‘I’ in Intersectionality: the unspoken pandemicMiss Zainab Alani, Medical Student, University of Glasgow & The Student Voice Prize 2021 winner Learn more about Myasthenia Gravis through myaware and OrphanetSponsorship NoticeM4RD was able to produce this event thanks to sponsorship by by Alexion Therapeutics and SOBI. Neither company has any editorial control over content and sponsorship does not equate to endorsement. Views expressed in this episode are personal and do not reflect those of the companies involved.This podcast is brought to you by Medics4RareDiseases. M4RD receives sponsorship from commercial companies. In 2022 this includes:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics and SOBI.These companies have no editorial control over this or any other M4RD content. Sponsorship does not equate to endorsement of companies or products. Views expressed during this podcast are personal and don't reflect those of M4RD sponsors.Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD's activities or content of this podcast.
The Unusual Suspects Live Recording Part 1 This is Part 1 of a live recording of The Unusual Suspects: Rare disease in everyday medicine which was hosted by M4RD and The Medical Genetics Section of The Royal Society of Medicine in February 2022.In this first part you will hear from Dr Lucy McKay on Rare Disease 101 and Aisha Seedat on The UK Rare Disease's Framework. Aisha lives with mucopolysaccharidosis type IV (Morquio Syndrome) and she reflects on what she would like to see from the Framework. M4RD was able to produce this event thanks to sponsorship by by Alexion Therapeutics and SOBI. Neither company has any editorial control over content and sponsorship does not equate to endorsement. Views expressed in this episode are personal and do not reflect those of the companies involved. LinksThe Royal Society of Medicine event page for The Unusual Suspects 2022The UK MPS SocietyThe Whose Voice is it Anyway report that Aisha contributed to.The Sickle Cell Society and the APPG's No-One's Listening Report  published following inquiry into avoidable deaths and failures of care for sickle cell patients.DeclarationDr Lucy McKay is on the Faculty Steering Committee for Medscape's Pathways for Rare Disease. She has received an honorarium in order to guide and develop this resource.Sponsorship NoticeThis podcast is brought to you by Medics4RareDiseases. M4RD receives sponsorship from commercial companies. In 2022 this includes:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics and SOBI.These companies have no editorial control over this or any other M4RD content. Sponsorship does not equate to endorsement of companies or products. Views expressed during this podcast are personal and don't reflect those of M4RD sponsors.Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD's activities or content of this podcast.
Episode 59 | Angelica wants to know how her grandmother died. Angelica Gauptman's grandmother died from complications of sarcoidosis.  Angelica is trying to figure out why.  She believes it had something do with the combination of Vitamin D and Prednisone.  To be clear there is no clinical evidence that proves a link.  Angelica is a high school senior with more than your average get up and go.  She has undertaken a survey of Sarc patients, and has gotten the attention of some top level researchers.  Hear her story, and the heartbreaking way her grandmother passed in this edition of the Sarc Fighter Podcast.

Show Notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
email Angelica [email protected]
Remember these hashtags for April!  #WhatIsSarcoidosis #MakeItVisible 
Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022
Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
 
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also — Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/
Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  <a href="https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1
Not your usual diabetes Do you know what DIDMOAD stands for? Get your medical dictionary ready…diabetes insipidus, diabetes mellitus, optic atrophy and deafness aka Wolfram Syndrome. This week Lucy is joined by Abby who is a young person living with Wolfram Syndrome, Tracy whose daughter has WS leading her to found Wolfram Syndrome UK with her husband and finally prof Tim Barrett from Birmingham Women's and Children's Hospital who is a Children's Diabetes and Endocrine Consultant.We explore the issues of diagnosis, variability in Wolfram Syndrome, living with complex needs and an invisible condition as well as research in rare disease. We really packed it into this episode!Wolfram Syndrome UKDiabetes GenesOrphanetGene ReviewsClinical trials.govThis activity is partially funded by:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin and SOBI.  Sponsorship does not equate to endorsement of any company or its products Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD's activities or content of this podcast.
Lifelines in Leukodystrophy – a supportive GP and peer support Aged six Alexander developed a squint and hearing loss which didn't cause too much alarm until he started displaying strange behaviours akin to dementia such forgetting where his bedroom was.  Despite concerns from Alex's parents, school and grandparents these symptoms were initially dismissed by the local GP. Sadly Alexander was not seen urgently for what would turn out to be a progressive condition that could only be mitigated by timely treatment with a bone marrow transplant.Aged six both Alex and his twin brother, Cameron, were diagnosed with the devastating condition, cerebral leukodystrophy. This is an x-linked condition that they had inherited through their mum, Karen, who was 40 weeks pregnant with her third son at the time.The following events are unimaginable for anyone who's not lived through it and, Karen says, looking back she also finds it hard to believe what happened. Karen and her husband were given Alexander's diagnosis on a Friday afternoon and received no support or follow up over the longest weekend of their lives. But their GP stepped up and literally turned up at their house to say he and his colleagues would be there for whatever they needed.This one small act set the tone for a supportive relationship from then on, putting the diagnostic odyssey behind them, and looking to the future as a partnership in the family's holistic care. This plus peer support through Alex The Leukodystrophy Charity were lifelines and continue to be lifelines for Karen and her family.Links  The Alex Leukodystrophy Charity (Alex TLC)Improving clinical care by learning about lived experience – a talk by Karen Harrison and Dr Alexandra Downes.Sponsorship NoticeThis podcast is brought to you by Medics4RareDiseases. M4RD receives sponsorship from commercial companies. In 2022 this includes:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin, Novartis, Orchard Therapeutics and SOBI.These companies have no editorial control over this or any other M4RD content. Sponsorship does not equate to endorsement of companies or products. Views expressed during this podcast are personal and don't reflect those of M4RD sponsors.Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD's activities or content of this podcast.
Welcome back! Lucy welcomes you back to The Rare Disease Podcast 4 Medics for season 2! Yay! This episode explains what M4RD has been up to this year so far and some plans for the future.The Unusual Suspects: Rare disease in everyday medicine was on 9th Feb. Soon you will be able to catch up on all the talks via the M4RD Video Library. Make sure you're on our our mailing list so you don't miss out.The winner of The Student Voice Prize 2021 was announced in February. Congratulations to the winner and runners up. Check out their essays here and if you didn't take part in this essay competition in 2021, 2022 can be your year. Check it out in October.The Guardian Rare Disease Day pullout. Find M4RD and Medscape on page 8 'Rare disease education is key to enabling medics to achieve the best for their patients'. You can check out Medscape's Pathways in Rare Disease here.Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study published today!And Lucy thanks M4RD's sponsors of their 2022 activities:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin and SOBI.  Sponsorship does not equate to endorsement of any company or its products Go here to find out more about how M4RD works with sponsors. Companies have not editorial control over any activities or content of this podcast.
Keep up with the Myrovlytis Trust and their new initiatives here:
Myrovlytis Trust
www.myrovlytistrust.org
LinkedIn: https://www.linkedin.com/company/the-myrovlytis-tr” id=”8arLDRKxnge” vid=”8arLDRKxnge” id-for-player=”8arLDRKxnge” link=”/listen/forging-a-path-in-rare-disease-research-feat-the-myrovlytis-trust-8arLDRKxnge/” is-authorized=”false” custom-styles=”margin: 0 24px 24px 0;”>
Forging a Path in Rare Disease Research, Feat. the Myrovlytis Trust In this episode of the podcast, we meet with our partners at the Myrovlytis Trust to talk about their work in rare disease research.
Keep up with the Myrovlytis Trust and their new initiatives here:
Myrovlytis Trust
www.myrovlytistrust.org
LinkedIn: https://www.linkedin.com/company/the-myrovlytis-trust
Twitter: @Myrovlytis
 
BHD Foundation
www.bhdsyndrome.org
Facebook: https://www.facebook.com/birthoggdube/
Twitter: @BHD_Foundation
BHD Registry: https://birt.healthie.net/register
 
Osteosarcoma Now
www.osteosarcomanow.org
Twitter: @OsteosarcomaNow
Assumptions, amputations and coordinated care Lucy is joined by Helena Baker who was born with a congenital limb defect, worked as a nurse and is the outgoing CEO of Rare Disease Nurse Network.Helena was born with fibular hemimelia – a disorder of limb budding results in a congenital limb malformation characterized by complete or partial absence of the fibula bone combined with dysplasia and hypoplasia of the tibia and dysplasia, hypoplasia or aplasia of parts of the foot (Orphanet).Despite having 100s of operations and having a fairly classical presentation of this condition Helena did not know her diagnosis until aged 49.5 years. Despite the name of the condition not changing her management it meant a lot to her family to be able to understand that nobody was to blame for what Helena had endured her whole life. And not long after Helena had to come to terms with the requirement to amputate her "little foot".In this episode Lucy and Helena talk openly about how an assumption of knowledge left her in the dark about her diagnosis, what it's like to say goodbye to your own limb and how coordination of care and better communication could make all the difference to people like Helena. Which is why she is passionate that RDNN become the Macmillan equivalent for rare disease. Sponsorship NoticeThis podcast is brought to you by Medics4RareDiseases. M4RD receives sponsorship from commercial companies. In 2022 this includes: Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin and SOBI. These companies have no editorial control over this or any other M4RD content. Sponsorship does not equate to endorsement of companies or products. Views expressed during this podcast are personal and don't reflect those of M4RD sponsors. Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD's activities or content of this podcast.
Episode 58 | Time to get ready for Sarcoidosis Awareness Month! April is Sarcoidosis Awareness Month!   In this episode of the Sarc Fighter podcast, three leaders from the Foundation for Sarcoidosis Research join me to talk about how the Foundation is working to raise awareness and some money for the fight, and how YOU can participate!  Whether it's taking some extra steps or posting to social media with special hashtags — it's important to help all of us in the battle for better health care and medications to fight sarc!



Remember these hashtags for April!  #WhatIsSarcoidosis #MakeItVisible 

Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

 

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also — Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=
S2 E1 – Not your usual diabetes Do you know what DIDMOAD stands for? Get your medical dictionary ready…diabetes insipidus, diabetes mellitus, optic atrophy and deafness aka Wolfram Syndrome. This week Lucy is joined by Abby who is a young person living with Wolfram Syndrome, Tracy whose daughter has WS leading her to found Wolfram Syndrome UK with her husband and finally prof Tim Barrett from Birmingham Women's and Children's Hospital who is a Children's Diabetes and Endocrine Consultant.We explore the issues of diagnosis, variability in Wolfram Syndrome, living with complex needs and an invisible condition as well as research in rare disease. We really packed it into this episode!Wolfram Syndrome UKDiabetes GenesOrphanetGene ReviewsClinical trials.govThis activity is partially funded by:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin and SOBI.  Sponsorship does not equate to endorsement of any company or its products Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD's activities or content of this podcast.
Season 2 Episode 0: Welcome back! Lucy welcomes you back to The Rare Disease Podcast 4 Medics for season 2! Yay! This episode explains what M4RD has been up to this year so far and some plans for the future.The Unusual Suspects: Rare disease in everyday medicine was on 9th Feb. Soon you will be able to catch up on all the talks via the M4RD Video Library. Make sure you're on our our mailing list so you don't miss out.The winner of The Student Voice Prize 2021 was announced in February. Congratulations to the winner and runners up. Check out their essays here and if you didn't take part in this essay competition in 2021, 2022 can be your year. Check it out in October.The Guardian Rare Disease Day pullout. Find M4RD and Medscape on page 8 'Rare disease education is key to enabling medics to achieve the best for their patients'. You can check out Medscape's Pathways in Rare Disease here.Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study published today!And Lucy thanks M4RD's sponsors of their 2022 activities:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin and SOBI.  Sponsorship does not equate to endorsement of any company or its products Go here to find out more about how M4RD works with sponsors. Companies have not editorial control over any activities or content of this podcast.
Episode 55 | Sarc Patient Robin Goble has lost her balance, but she’s fighting to keep her life upright. Sarcoidosis patient Robin Goble once lived an active life that included cycling, hiking and hanging out with her friends while helping to raise two teenage sons.  Then sarcoidosis showed up in her life.  Now she is trying to get past the problems and looking for answers while helping other sarcoidosis patients cope with their problems.



Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also — Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  [email protected]

Shakshuka

Serves 4

Ingredients and Prep


·       3 Tablespoons Extra Virgin Olive Oil

 



·       1 – 4 oz can green chilies
Exciting Rare Disease Developments in the EU, feat. HAE Junior Hello and Happy Rare Disease Day! This week, we discuss some exciting developments concerning rare disease awareness in the EU, specifically in the Czech Republic, with Camelia Isaic and Anežka Dašková of HAE Junior. To learn more about HAE Junior, click here. More information about HAE Junior art exhibition can be found here. Read more about the EU Council Presidency's focus on rare disease for 2022-2022 here. And keep up with Anežka's YouTube Channel here.

 



 

Show Notes

More about Dr. Shu-Yi Liao: https://www.nationaljewi” id=”4H3fwt1CSKk” vid=”4H3fwt1CSKk” id-for-player=”4H3fwt1CSKk” link=”/listen/episode-56-dr-shu-yi-liao-wants-to-know-how-sarcoidosis-moves-in-the-body-4H3fwt1CSKk/” is-authorized=”false” custom-styles=”margin: 0 24px 24px 0;”>
Episode 56 | Dr. Shu-Yi Liao wants to know how sarcoidosis moves in the body. Dr. Shu-Yi Liao is trying to answer the questions we all have about sarcoiodosis. How does it move within our bodies? And why do some people get it and others not?  Beyond that, what can be done to stop or prevent the disease?

 



 

Show Notes

More about Dr. Shu-Yi Liao: https://www.nationaljewish.org/doctors-departments/providers/physicians/shu-yi-liao

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

 

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also — Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/<
Thyroid cancer – Carly Flumer In this episode, I speak to Carly who has been diagnosed with thyroid cancer in both 2017 and 2021. Now in remission, Carly still gets symptoms such as fatigue which can affect her day-to-day life. I talk to Carly about care young people need in hospital, help we need from professionals, support Carly has had for her mental health and advice she would give others with a rare disease.



Show Notes

Universal Barriers Podcas” id=”7Trz3T86hCb” vid=”7Trz3T86hCb” id-for-player=”7Trz3T86hCb” link=”/listen/episode-55-erica-courtenay-mann-has-sarcoidosis-on-her-vocal-cords-but-she-is-speaking-out-7Trz3T86hCb/” is-authorized=”false” custom-styles=”margin: 0 24px 24px 0;”>
Episode 55 | Erica Courtenay-Mann Has Sarcoidosis on her Vocal Cords. But she is speaking out! Erica Courtenay-Mann was feeling tired all the time.  Beyond tired.  Fatigued and unmotivated, but nobody understood.  It was the onset of sarcoidosis.  After several attempts for treatment — her doctor noticed her neck didn't look right.  This is her story.



Show Notes

Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also — Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  [email protected]
Preview: Rare Disease Week 2022 feat. The EveryLife Foundation for Rare Diseases Britta Dornan and Sarah Tompkins from the EveryLife Foundation for Rare Diseases join us to preview Rare Disease Week 2022. This important event runs from February 22 through March 2 and brings together rare patients from across the U.S. to make their voices heard. To learn how you can get involved, visit the EveryLife Foundation website here, and follow along with #RAREDC2022 on social media.
Bonus Episode | Universal Barriers in Dealing with a Chronic Disease: A Sarcoidosis Perspective In this Bonus Episode of the Sarc Fighter podcast, listen in to the special seminar hosted by The Foundation for Sarcoidosis Research as a physician and two sarc patients look at barriers to health care that cannot be overcome unless we all begin to recognize that they are real and won't go away on their own.  The discussion is led by Sarc Fighter host John Carlin.

 

Show Notes

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also — Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  [email protected]
Join us for our third online webinar, in recognition of World Cancer Day in February.
Brought to you by Novartis, Rar” id=”2uRH0YRDifJ” vid=”2uRH0YRDifJ” id-for-player=”2uRH0YRDifJ” link=”/listen/world-cancer-day-patient-and-caregiver-forum-2uRH0YRDifJ/” is-authorized=”false” custom-styles=”margin: 0 24px 24px 0;”>
World Cancer Day Patient and Caregiver Forum Cancer is a debilitating disease and can place an enormous physical, emotional, social, and financial burden on the people providing long-term, continuous care for affected patients.
Join us for our third online webinar, in recognition of World Cancer Day in February.
Brought to you by Novartis, Rare Diseases South Africa (RDSA), in association with CANSA, The Breast Health Foundation and Meta Buddies, would like to invite all caregivers, patients and those advocating to bridge the gap for patient care to join us as we discuss these challenges.
Episode 52 | Dr Divya Patel and Novartis are looking for a few good Sarc patients As we begin 2022, there is even more reason for hope.  And on this episode of the Sarc Fighter podcast, Dr, Divya Patel joins me to talk about a clinical trial that could lead to an advancement in the fight against Pulmonary Sarcoidosis.  In this edition of the Sarc Fighter podcast, Dr. Patel explains the clinical trial process and describes the trail she is working on at the University of Florida in connection with the Foundation for Sarcoidosis Research.



Show notes

Learn about the clinical trial from Novartis: https://www.stopsarcoidosis.org/novartis-partners-with-the-foundation-for-sarcoidosis-research-on-a-new-clinical-trial/

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also — Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  [email protected]
Bridging the Challenges in Cell Therapies, feat. Dr. Brad Heller of Achieve Clinics In this episode, we sit down with Dr. Brad Heller, the founder of Achieve Clinics, to discuss the potential of cell therapies, some of the current challenges and how his organization is tackling these. Learn more about Achieve Clinics here: www.achieveclinics.com.
Episode 54 | Calvin Harris’ lungs are clogged with Sarcoidosis — but he wants to run a marathon. Calvin Harris lives in New York City, where he balances his time working as a CFO with running and giving back to his community.  He also writes a popular blog called Run Your Own Race.  And that's what he is doing.  In this episode of the Sarc Fighter podcast, Calvin talks about how he deals with all the medications he is taking to keep his sarcoidosis under control, while he trains for a marathon with his sights set on completing the famous New York City marathon in the near future.  



Read Calvin's Blog https://sarcoidosisnews.com/category/columns/run-your-own-race-a-column-by-calvin-harris/

Foloow Calvin on Peloton Calvinfnharris

Follow me on Peloton SarcFighter

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also — Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  [email protected]
Episode 17: Amy Fenton Parker, President and CEO at Batten Disease Support and Research Organization (BDSRA) Why are advocacy and accessibility so important to rare diseases such as Batten Disease? On this week’s Few & Far Between podcast episode, Biorasi’s Becky Knockemus talks with Amy Fenton Parker, President and CEO at Batten Disease Support and Research Organization (BDSRA).
Episode 53 | Reasons for hope in the fight against Sarcoidosis in 2022 As we begin a new year it's time to take a look at what's ahead in 2022.  Both for ourselves and for the sarcoidosis community at large.  In episode 53 I take a look at what you can do to fight sarc in your own personal battle as you make your new year's resolutions, as well as a look t what researchers, doctors and others are doing to further the fight against the disease, whether it's a new medicine, sarcoidosis awareness or patient outreach.

Show notes

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also — Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  [email protected]
Episode 12: Effie Parks and Spela Mirosevic Social media platforms and podcasts are spotlighting the untold stories of rare disease patients and their families. Find out more in today's Few & Far Between podcast episode. Biorasi's Becky Knockemus welcomes guests Effie Parks, host of the Once Upon a Gene podcast, and Špela Miroševič, co-founder and president of the CTNNB1 Foundation.
Episode 13: Kelly Franchetti RN, SVP, Global Head Patient Insights and Strategy at YPrime How has patient advocacy grown to become the driver of rare disease drug development? In today's episode of Biorasi's Few & Far Between podcast, host Marc Gas, PhD, welcomes Kelly Franchetti, RN, SVP at YPrime, to discuss where advocacy is headed and where it needs to go.
Episode 14: Bo Bigelow, Chairman at the Foundation for USP7-Related Diseases, and Trish Flanagan, President at the Yellow Brick Road Project How will a rare disease diagnosis affect your family? Today's Few & Far Between episode features Bo Bigelow, Chairman at the Foundation for USP7-Related Diseases and Co-Founder of DISORDER: The Rare Disease Film Festival, and Trish Flanagan, President at the Yellow Brick Road Project.
Episode 15: Dr. Terry Jo Bichell, Founder and Director of COMBINEDBrain Raising awareness for rare diseases, such as Angelman Syndrome, should not be something parents, patients, and advocates have to do alone. Today's episode of Few & Far Between features Dr. Terry Jo Bichell, Founder and Director of COMBINEDBrain. Biroasi CEO, Chirs O'Brien, is your host for this discussion on biomarkers, treatment, and the rise in community collaboration across rare diseases.
Episode 16: Dr. Alex Adjei, Scientific Advisory Board Member at Biorasi Welcome to a special epsiode of Few & Far Between. Our guest this week is oncologist Dr. Alex Adjei, Scientific Advisory Board Member at Biorasi, and Professor of Oncology and Pharmacology at the Mayo Clinic and Mayo College of Medicine in Rochester, Minnesota. Join our host, Dr. Dipali Patel, for an in-depth discussion on lung cancer – an urgent, global disease that requires empathy and understanding.
Episode 0: Welcome to the Few & Far Between Podcast Welcome to Few & Far Between: Conversations About Rare Disease Research with your host, Chris O'Brien. Episode Zero contains everything you need to know about the podcast and Biorasi's goal to provide an open discussion on trending topics and innovations in rare and urgent disease clinical research.

Episode 1: Paula Evans, CEO and Co-Founder of GeneTx Biotherapeutics On today’s podcast, Jimmy El Hokayem, Head of the Neurology and Regenerative Medicine Centers of Excellence and Associate Director of Program Development at Biorasi, will be talking with Paula Evans, CEO and Co-Founder of GeneTx Biotherapeutics.
Episode 2: Julie Walters, Founder and Executive Director of Xperiome/Raremark On today’s podcast, host Wayne Bowden, Vice President of Partnerships and Strategy at Biorasi, will be talking with Julie Walters, Founder and Executive Director of Xperiome and the driving force behind Raremark – an innovative knowledge bank for rare disease patients.
Episode 3: Danielle Drayton, PhD, CEO of REACH Market Research On today’s podcast, host Wayne Bowden, Vice President of Partnerships and Strategy at Biorasi, will be discussing insights into market research solutions for rare diseases with Danielle Drayton, PhD, CEO of REACH Market Research.
Episode 4: Marianne Clancy, Executive Director at Cure HHT On today’s podcast, host Wayne Bowden, Vice President of Partnerships and Strategy at Biorasi, talks with Marianne Clancy, Executive Director at Cure HHT, about the foundation and their goal of reducing the number of undiagnosed cases of HHT.
Episode 5: Will Maier, VP of Rare Disease, Drug Development Sciences at ICON plc On today’s podcast, host Wayne Bowden, Vice President of Partnerships and Strategy at Biorasi, talks with Will Maier, VP of Rare Disease, Drug Development Sciences at ICON plc, about clinical trial engagement in the rare disease patient community.
Episode 6: Dr. Mehool Patel and Dr. Dilhan Weeraratne, IBM Watson Health On today's podcast, host Wayne Bowden joins Biorasi's Omar Ibrahim and IBM Watson Health HOPE team members Dr. Mehool Patel and Dr. Dilhan Weeraratne to discuss glioblastoma and the importance of real-world evidence in clinical research.
Episode 7: US Congressman Gus Bilirakis On today's podcast, US Congressman Gus Bilirakis joins host Wayne Bowden to discuss the importance of rare disease awareness and treatment.
Episode 8: David Rose, Rare Disease Speaker and Advocate On today's podcast, speaker and rare disease advocate David Rose talks with Biorasi's Dr. Raul Silveira about occipital horn syndrome and supporting rare disease patients in the workforce.
Episode 9: Zogenix, Inc.'s Dawn Blessing and J. Michael Graglia from SynGAP Tune in for today's full episode of Few & Far Between. Episode 9 features Biorasi's Becky Knockemus, Zogenix, Inc.'s Dawn Blessing, and J. Michael Graglia from SynGAP Research Fund, discussing the importance of diagnosing #raredisease early and the critical step of sharing study data.
Episode 10: Sharon Terry, CEO Genetic Alliance Why is the sharing of data so crucial to #raredisease research? Tune in for today's full episode of Few & Far Between. Episode 10 features Sharon Terry, CEO at Genetic Alliance and #pseudoxanthomaelasticum (PXE) advocate.
Episode 11: Rebecca Stewart and Nicola Miller from Rare Revolution Magazine How important is transparency to the rare disease community? Today's full episode of Few & Far Between features Biorasi's Lindsey Rios, with guests Rebecca Stewart and Nicola Miller from Rare Revolution Magazine.
The Importance of Getting Involved, Feat. Friedreich‘s Ataxia Advocate Kyle Bryant This week, we talk to patient advocate and FA ambassador for the Friedreich's ataxia Research Alliance, Kyle Bryant, about the importance of getting involved in rare disease communities. To learn more about Friedreich's ataxia, visit curefa.org. Listen to Kyle's podcast, Two Disabled Dudes, at twodisableddudes.com.

 



Amy is th” id=”1WbHbOpfwJY” vid=”1WbHbOpfwJY” id-for-player=”1WbHbOpfwJY” link=”/listen/episode-51-amy-whaley-fights-on-through-a-life-that-was-different-than-she-imagined-1WbHbOpfwJY/” is-authorized=”false” custom-styles=”margin: 0 24px 24px 0;”>
Episode 51 | Amy Whaley fights on through a life that was different than she imagined. Amy Whaley is a caregiver.  Her husband, Bobby suffers from a severe case of sarcoidosis.  They are fighting sarc together.  In this episode of the Sarc Fighter podcast, Amy talks about her life, her role as a a caregiver and how life changed shortly after she and Bobby were married.

 



Amy is the first care giver to appear on the Sarc Fighter podcast.  Like all caregivers, she is essential to the life of the person with Sarcoidosis.  Without these loving people's sacrifice, we could not go on with our daily lives.  It's important to note the impact sarcoidosis has not just on the patient, but those around them.

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also — Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  [email protected]
Episode 9: The Miller family on XP and Xmas (including a quiz!) Eddison is almost 11 and lives with a rare genetics disorder called Xeroderma Pigmentosum. He and his brother talk about growing up in the rare disease community and how they manage to completely avoid the sun and other UV radiation in order to prevent irreversible damage to Eddison. Raife and I touch on "sibling status" and the rather unique position this puts you in. Nicola (Miller of Rare Revolution fame and also mum to these brilliant boys) also joins to give her perspective.Raife and Eddison then quiz the M4RD staff team in a Genetics Xmas quiz!!To see Raife and Eddison in action check then out at RareFEST 2019 organised by Cambridge Rare Diseases Network (CRDN): https://www.youtube.com/watch?v=z0E-poOBKtI&t=390sWatch Nicola's presentation on the efforts she had to go to in order to get Eddison's diagnosis:  https://www.m4rd.org/videos/do-you-hear-me-a-parents-perspective-on-rare-disease/Learn more about Xeroderma Pigmentosum: https://www.teddingtontrust.com/Browse Rare Revolution Magazine: https://rarerevolutionmagazine.com/

To learn more about CAR T-cell therapy, click here: https://bit.ly/3GIAsAj.

Dr. Stacy-Humphries also recomme” id=”A9xPvSRn7QK” vid=”A9xPvSRn7QK” id-for-player=”A9xPvSRn7QK” link=”/listen/the-potential-of-car-t-cell-therapy-feat-dr-robyn-stacy-humphries-A9xPvSRn7QK/” is-authorized=”false” custom-styles=”margin: 0 24px 24px 0;”>
The Potential of CAR T-Cell Therapy, Feat. Dr. Robyn Stacy-Humphries In this episode, we sit down with Dr. Robyn Stacy-Humphries with Charlotte Radiology. She talks about her diagnosis of diffuse large B-cell lymphoma and treatment with CAR T-cell therapy.

To learn more about CAR T-cell therapy, click here: https://bit.ly/3GIAsAj.

Dr. Stacy-Humphries also recommends a private Facebook group for CAR T-cell patients and their care partners, here: https://bit.ly/3oUvAly
Episode 8: Dr Sondra Butterworth on Inclusivity Dr Sondra Butterworth is from a rare disease family, a carrier of a rare disease and her PhD focused on the quality of life and social support of people living with rare diseases. She talks to Lucy about what it's like to come from a poor, black, rare disease family in Cardiff and how she's turning both her personal and professional experiences into real change for rare disease communities.  Sondra is the founder of RareQoL and the Whose Voice is it Anyway campaign – started because some groups within the rare community feel that their voices go unheard #whosevoiceAlso some RuPaul's Drag Race chat. RuPaul…if you're listening, we're your biggest fans.RareQoL: https://rareqol.co.uk/#WhoseVoice report: https://www.m4rd.org/2021/10/26/whose-voice/Narrative Based Medicine review: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5851389/Rita Charon's Tedx on Narrative Based Medicine: https://www.youtube.com/watch?v=7Uc0jmUkA3ENo-one's Listening report on Sickle Cell Society's website: https://www.sicklecellsociety.org/no-ones-listening/Kimberlé Crenshaw's talk on intersectionality: https://www.ted.com/talks/kimberle_crenshaw_the_urgency_of_intersectionality?language=en
Join us for our second online webinar, in recognition of National Family” id=”3UETo6m7KEg” vid=”3UETo6m7KEg” id-for-player=”3UETo6m7KEg” link=”/listen/nets-neuroendocrine-tumour-pituitary-patient-and-caregiver-forum-3UETo6m7KEg/” is-authorized=”false” custom-styles=”margin: 0 24px 24px 0;”>
NETS (Neuroendocrine Tumour) & Pituitary Patient and Caregiver Forum Debilitating diseases such as NETS (Neuroendocrine Tumours) and Pituitary Tumours can place an enormous physical, emotional, social, and financial burden on the people providing long-term, continuous care for affected patients.
Join us for our second online webinar, in recognition of National Family Caregivers Month in November.
Rare Diseases South Africa (RDSA) would like to invite all caregivers and patients to join us as we discuss the challenges of being a caregiver, and possible solutions.
Episode 50 | Warren Robinson‘s father died suddenly. And the family struggled to find out why. Warren D. Robinson is a Television Producer with a law degree to boot.  When his father suddenly died from sarcoidosis he decided he wanted to join the fight to help patients suffering from Sarc.  In this episode of the Sarc Fighter podcast, Warren tells the story of how his father showed no signs of the disease until after his sudden death.  Here was a man who lived to help others and always took great care of himself, from getting proper exercise to eating right and everything else healthy people do.  Then one day he just didn't wake up.

 

 



Learn more about Warren and his background as an attorney and producer for Netflix.

https://www.warrendrobinson.com/

 

The back story to Buried by the Bernards — Warren's show on Netflix https://indianapolisrecorder.com/indianapolis-producer-brought-us-buried-by-the-bernards/

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also — Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  [email protected]
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