88 Best Rare Disease Podcasts

1. Once Upon A Gene

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As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bonded, and grown...more Host Effie Parks
Email ****@ctnnb1.org
Estimated Monthly Listeners 10k-50k
Recent Guests Christy Foster, Brittni Lamb +24 more
Apple Rating 5/5Apple Reviews 299Facebook 2.2KTwitter 5.3KInstagram 35.3K Avg Length 42 min Format Long form Get Email Contact Get access to full database of 2.7M podcastsCreate podcast lists, export in spreadsheet or CSV file with email contacts and start your podcast outreach in minutes.Sign Up for Free with Email Continue with Google

2. Remember Me

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The Remember Me Podcast is a heartfelt and informative series dedicated to supporting families, caregivers, and individuals affected by Frontotemporal Dementia (FTD). Hosted by Maria Kent Beers and Rachael Martinez, both of whom have personal experiences with FTD caregiving, the podcast aims to provide connection, understanding, and advocacy for those navigating the challenges of this rare and often misunderstood disease. Visit our website www.remembermeftd.com Join us on Patreon at www.patreon.com/remembermecommunity Follow us on Instagram @remembermepodcast.more Hosts Rachael Martinez, Maria Kent Beers
Producer/Network Remember Me Podcast
Email ****@gmail.com
Estimated Monthly Listeners 1k-10k
Recent Guests Meg, Kim +10 more
Apple Rating 5/5Apple Reviews 108 Avg Length 55 min Format Long form Get Email Contact

3. SYNGAP1 Stories

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SYNGAP1-Related Disorders are rare genetic disorders that affect Rainy Schlosser's daughter Hope and Jo Ashline's son Andrew. As of January 1, 2026, only 1,707 people in the world were diagnosed. There is no cure. In each episode of SYNGAP1 Stories, first developed by Ashley Frye and continued by Rainy and Jo, we chat with SYNGAP1 parents, volunteers, caregivers, researchers, and partners about their journey with SYNGAP1 in their lives. Their joys and successes, as well as heartaches and advice, will be discussed in this heart-warming series as we support the SYNGAP1 community.more Host Ashley Frye
Producer/Network SYNGAP1 Podcasts by SRF
Email ****@curesyngap1.org
Estimated Monthly Listeners 1k-10k
Recent Guests Beata Tarasiuk, Virginie McNamar +14 more
Apple Rating 5/5Apple Reviews 31Facebook 6.5KInstagram 43.5K Avg Length 46 min Format Long form Get Email Contact

4. Confessions of a Rare Disease Mama

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Join me every week as I navigate the ups and downs, and everything in between of the crazy stressful, but always beautiful life of being a rare disease parent.
Host Jillian Arnold
Email ****@gmail.com
Estimated Monthly Listeners 1k-10k
Recent Guests Donald, Brittany Markham +5 more
Apple Rating 5/5Apple Reviews 51Facebook 3.2K Avg Length 41 min Format Long form Get Email Contact

5. Sarc Fighter: Living with Sarcoidosis and other rare diseases

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Fighting sarcoidosis as well as other rare diseases.
Host John Carlin
Email ****@gmail.com
Estimated Monthly Listeners 1k-10k
Recent Guests Dan Frank, Tricha Shivas +18 more
Apple Rating 4.9/5Apple Reviews 58 Avg Length 52 min Format Long form Get Email Contact

6. Patient Empowerment Program: A Rare Disease Podcast

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Join the nano-rare disease community! Interviews features leading physicians, scientists, biotech experts, and patient advocates. Lessons teach core concepts about drugs. Our host Dr. Crooke has led the creation of antisense technology and his foundation, n-Lorem, is using this powerful technology to discover, develop, and provide personalized experimental antisense oligonucleotide medicines to nano-rare patients for free, for life...more Host Dr. Stan Crooke
Producer/Network n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen)
Email ****@nlorem.org
Estimated Monthly Listeners 1k-10k
Recent Guests Callan Pleasant, Oliver Glass +13 more
Apple Rating 5/5Apple Reviews 38Facebook 1.2KTwitter 1.3KInstagram 2K Avg Length 43 min Format Long form Get Email Contact

7. Living With PSC

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Primary sclerosing cholangitis (PSC) is a rare disease that affects the bile ducts inside and outside of the liver. There is no cure, and no treatments exist to slow the progression of PSC. This podcast, moderated by Niall McKay, explores the latest research and knowledge about PSC: from patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all!PSC Partners Seeking a Cure is a nonprofit organization dedicated to providing education and support to PSC patients and caregivers, and raising..more Producer/Network PSC Partners Seeking a Cure
Email ****@pscpartners.org
Estimated Monthly Listeners 1k-10k
Recent Guests Harriet Medeley, Dr. Sharron Millen +6 more
Apple Rating 4.9/5Apple Reviews 33Facebook 4.5KTwitter 2.5K Avg Length 31 min Format Medium form Get Email Contact

8. Rare Mamas Rising: A Rare Disease Mom Podcast

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Rare Mamas Rising is a podcast for mothers of children with rare diseases to find strategies, strength, support, and sisterhood! Hosted by Nikki McIntosh, founder of Rare Mamas, author of the book Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease, and a rare mom herself, each episode offers heartfelt reflections, practical tools, and empowering strategies to help you rise to the call of rare disease parenting. Catch an episode of Rare Mamas Rising and walk away encouraged, uplifted, and empowered. We rise stronger when we rise together—let's rise!more Host Nikki McIntosh
Email ****@raremamas.om
Estimated Monthly Listeners 1k-10k
Apple Rating 5/5Apple Reviews 58 Avg Length 22 min Format Medium form Get Email Contact

9. The Grace, Grief and Grit Podcast

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Epidermolysis Bullosa is often called the worst disease you've never heard of. The Grace, Grief and Grit Podcast along with the nonprofit organization Heroes for Hallie Grace, will shine a light on this rare condition that affects 200,000 families every year. While there are limited treatment options, currently there is no known cure. In this podcast, we will highlight the legacy of Hallie Grace who fought Junctional Epidermolysis Bullosa (JEB) with her family's support for three months...more Producer/Network Dee Daniels Media Podcast Network
Estimated Monthly Listeners 100-1k
Recent Guests Betsy Kammerud, Krista Isaacson +9 more
Apple Rating 5/5Apple Reviews 8 Avg Length 53 min Format Long form Get Email Contact

10. Insightful Moments: My VIBE

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Everyone in the rare disease community has a story and every individual, every parent, every caregiver has a unique story to tell. Insightful Moments: My VIBE is here to tell those stories. We want to tell YOUR real-life stories and experiences from the rare disease community to inspire and remind listeners that we're all in this together.more Host Emily Hintze
Producer/Network PTC Therapeutics
Email ****@ptcbio.com
Estimated Monthly Listeners 100-1k
Apple Rating 5/5Apple Reviews 5Facebook 6.9KTwitter 2.4KInstagram 4.5K Avg Length 50 min Format Long form Get Email Contact

11. Rarely Typical Podcast

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Welcome to Rarely Typical, the podcast that dives into life with chronic illness, rare disease, and everything in between. Hosted by Gerry, a pulmonary arterial hypertension and heart failure advocate, this show offers honest conversations, candid opinions, practical tips, and a dose of hope to help you navigate the unpredictable. Whether you're a patient, a caregiver, or just curious, join me for real stories, expert insights, and a reminder that life can be beautiful—even when it's rarely typical. itsgerrylangan.substack.commore Producer/Network Gerry Langan
Email ****@gerrylangan.com
Estimated Monthly Listeners 1k-10k
Recent Guests Eric Borstein, Dr. Peter Hountras +8 more
Apple Rating 5/5Apple Reviews 17 Avg Length 30 min Format Medium form Get Email Contact

12. FabryCast

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The FabryCast brings the human element of living with a rare disease. It's a podcast for important conversations that teaches small bits of information, practical insights, and things you can do today to positively impact your life with Fabry.   Hear from experts in the field, have the opportunity to 'Ask a Doctor Anything' and keep up to date with what's happening in the Fabry space. more Host Julia Alton
Producer/Network Canadian Fabry Association
Email ****@fabrycanada.com
Estimated Monthly Listeners 100-1k
Recent Guests Linda Quaranta, Dr. John Jeffries +6 more
Apple Rating 5/5Apple Reviews 13 Avg Length 35 min Format Medium form Get Email Contact

13. RARECast

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RARECast is a Global Genes podcast hosted by award-winning journalist Daniel Levine. It focuses on the intersection of rare disease with business, science, and policy.
Host Daniel Levine
Producer/Network RARECast
Email ****@levinemediagroup.com
Estimated Monthly Listeners 1k-10k
Recent Guests John Wollman, Akash Kumar +19 more
Apple Rating 4.7/5Apple Reviews 16 Avg Length 38 min Format Medium form Get Email Contact

14. The Rare Disease Podcast

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3.5 million people in the UK live with a rare disease, so while each disease is individually rare, together rare diseases are common. Hear interviews with patients, clinicians, advocates, students and researchers focusing on rare disease in clinical medicine. This podcast is brought to you by Medics for Rare Disease. Podcast distributors create their own transcripts and M4RD doesn't take responsibility for themmore Host Lucy McKay
Producer/Network Medics4RareDiseases
Email ****@m4rd.org
Estimated Monthly Listeners 100-1k
Recent Guests Dr. Lisa Kaufman, Charlotte Chapman Hart +8 more
Apple Rating 5/5Apple Reviews 13Facebook 1.7KTwitter 5.2KInstagram 3.2K Avg Length 49 min Format Long form Get Email Contact

15. Rare Discussions

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Conversations with the leaders advancing rare disease care. Rare Discussions is CheckRare's flagship interview podcast featuring conversations with leading physicians, researchers, patient advocates, and industry experts. These episodes explore advances in diagnosis, treatment, research, and patient care across the rare disease landscape. Whether highlighting groundbreaking therapies or sharing expert clinical perspectives, Rare Discussions highlights the experts who are shaping the future of rare disease medicine.more Producer/Network Peter Ciszewski, CheckRare
Email ****@biotech5.com
Estimated Monthly Listeners 100-1k
Recent Guests Shunji Tomatsu, Merve Emecen Sanli +6 more
Apple Rating 5/5Apple Reviews 3Facebook 9.1KTwitter 3K Avg Length 19 min Format Short form Get Email Contact

16. Journeys through pulmonary fibrosis

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Being diagnosed with a rare disease can often leave people with more questions than answers. This is especially true for those living with the rare lung condition, Pulmonary Fibrosis. In an effort to build and give a voice to this courageous community, we bring you 'Journeys through Pulmonary Fibrosis' a podcast series aimed at bringing together the inspirational people living with this condition, their carers, and the researchers and doctors working tirelessly to support them...more Producer/Network Boehringer Ingelheim International GmbH
Email ****@boehringer-ingelheim.com
Estimated Monthly Listeners 100-1k
Apple Rating 4.8/5Apple Reviews 11Facebook 1.3MTwitter 105KInstagram 84.5K Avg Length 27 min Format Medium form Get Email Contact

17. Being Rare Podcast

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The Being Rare podcast intersects rare disease, leadership, and systems change. It examines how policy, clinical practice, innovation, and institutional decision-making shape the lived experience of being rare, whether as a patient, caregiver, clinician, advocate, or leader. Hosted by Sarita Edwards, Being Rare extends beyond storytelling. Each conversation brings together diverse perspectives to challenge assumptions, uncover blind spots, and drive more effective, equitable outcomes. Follow Being Rare today, wherever you stream your podcasts!more Host Sarita Edwards
Email ****@theewefoundation.org
Recent Guests Royce Robertson, Jenifer Waldrop +4 more
Facebook 248Twitter 270Instagram 751 Avg Length 28 min Format Medium form Get Email Contact

18. PSPA Podcast

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The PSPA Podcast will provide discussions and information for people caring for someone living with rare brain diseases, PSP or CBD. This podcast is brought to you thanks to the kind support of the Pavers Foundation in memory of Mary Youll.more Producer/Network PSPA
Email ****@pspassociation.org.uk
Estimated Monthly Listeners 100-1k
Recent Guests Peggy Newton, Helen Chapman +15 more
Apple Rating 5/5Apple Reviews 3Facebook 11.5KTwitter 4.2KInstagram 2.4K Avg Length 32 min Format Medium form Get Email Contact

19. IFOPA Podcast Series

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The International Fibrodysplasia Ossificans Progressiva (FOP) Association (IFOPA) serves families living with the ultra-rare genetic disease fibrodysplasia ossificans progressiva, as well as researchers and health care providers studying and treating this disease. The IFOPA is a US-based nonprofit organization whose mission is to fund research to find a cure for FOP while supporting, connecting and advocating for individuals with FOP and their families, and raising awareness worldwide. You can find us online at ifopa.org.more Host Hope Newport
Producer/Network IFOPA
Email ****@ifopa.org
Recent Guests Laura Rossano, Mark Rossano +14 more
Facebook 5.3KTwitter 810Instagram 1.7K Avg Length 38 min Format Medium form Get Email Contact

20. A Rare Reality

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We are living 'A Rare Reality' and we want to tell you all about it! Join Jordan's Guardian Angels as we cover dozens of topics in the rare disease space and give you a closer look at our groundbreaking research into Jordan's Syndrome that could one day change the world. We want to uplift, advocate, motivate and inform.more Producer/Network Jordan's Guardian Angels
Email ****@jordansguardianangels.org
Estimated Monthly Listeners 100-1k
Recent Guests Carole Bakhos, Lisa McCarty +8 more
Apple Rating 5/5Apple Reviews 7Facebook 3.9KTwitter 284Instagram 1.6K Avg Length 30 min Format Medium form Get Email Contact

21. The Rare Disorder Podcast

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The Rare Disorder Podcast is a podcast created by Shivani Vyas, a high school senior, young changemaker, and rare disease advocate, dedicated to spreading awareness for rare diseases. This podcast is divided into 2 main series. In the 'Meet a Fighter,' Shivani interviews patients and those affected by rare diseases allowing them to share their inspirational stories. In 'Meet An Expert/Partner,' Shivani interviews public health experts, rare disease organization leaders, rare advocacy leaders, and more!Check out my other initiatives and platforms: https://linktr.ee/theraredisorderpodcastmore Producer/Network Shivani Vyas
Email ****@gmail.com
Estimated Monthly Listeners 100-1k
Recent Guests Samuel Taggard, Wes Michael +5 more
Apple Rating 5/5Apple Reviews 2 Avg Length 29 min Format Medium form Get Email Contact

22. Rare Care Podcast

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Rare Disease Advisor's Rare Care Podcast features exclusive interviews with experts and stakeholders from the rare disease community.
Host Michael Nace
Producer/Network Rare Care Podcast
Email ****@haymarketmedia.com
Estimated Monthly Listeners 100-1k
Recent Guests Henriette Farkas, Kathryn Swoboda +18 more
Apple Rating 5/5Apple Reviews 3 Avg Length 14 min Format Short form Get Email Contact

23. Rare on Air

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A EURORDIS-Rare Diseases Europe podcast on the experiences, challenges and successes of people living with rare diseases. Julien Poulain, Communications Manager at EURORDIS, meets with people who share their unique experiences of living with a rare disease, those who advocate for them, and experts on rare disease policy. Email the EURORDIS Rare on Air team at: ****@eurordis.org.more Host Julien Poulain
Producer/Network EURORDIS
Email ****@eurordis.org
Estimated Monthly Listeners 100-1k
Recent Guests Nora Lazaro, Johan de Graaf +4 more
Apple Rating 5/5Apple Reviews 11Facebook 44.4KTwitter 31.4KInstagram 9.4K Avg Length 13 min Format Short form Get Email Contact

24. LEMS Aware

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*Disclaimer: Opinions shared in this podcast may not reflect the opinions of Catalyst Pharmaceuticals, Inc. Let's talk about rare diseases. The LEMS Aware Podcast lets you hear directly from people in the Lambert-Eaton myasthenic syndrome (LEMS) and other rare disease communities on topics that matter. We talk with patients and caregivers who want to share more than their story they want to ignite conversations about LEMS and common rare disease experiences and needs. Join us as we talk about building community and how to discuss the hard topics in the LEMS Aware Podcast...more Producer/Network Catalyst Pharmaceuticals, Inc.
Email ****@amazemedialabs.com
Estimated Monthly Listeners 100-1k
Recent Guests Maria, Patrick +10 more
Apple Rating 5/5Apple Reviews 3 Avg Length 29 min Format Medium form Get Email Contact

25. COR2ED - Rare Diseases Medical Conversation

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Join medical experts as they discuss their approaches to identifying, treating, and managing rare diseases, like primary biliary cholangitis, neuroendocrine tumours, rare bone diseases, and growth disorders. The conversations also explore the evolving treatment landscape, including exciting innovations in gene therapies and the use of somatostatin analogues. This independent medical education podcast is for HCPs with the ultimate goal of improving care for their patients. For more information, visit www.cor2ed.commore Producer/Network COR2ED Medical Education
Email ****@gmail.com
Recent Guests Dr Heloisa Soares, Prof. Ken Herrmann
Avg Length 23 min Format Medium form Get Email Contact

26. Living Ultra Rare: The ABL+ Podcast

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Barry Funkhouser, Paul Biderman and guests discuss living with ultra rare diseases. The goal of this podcast is to raise awareness about rare illnesses and the people who live with them.Abetalipoproteinemia and Related Disorders Foundation is a non-profit, volunteer organization that provides guidance on needed scientific research, diagnosis, and management of abetalipoproteinemia and related hypolipidemias, such as chylomicron retention disease and familial hypobetalipoproteinemia. To donate: https://www.ablfoundation.org/donatemore Hosts Barry Funkhouser, Paul Biderman
Producer/Network ABL+ Foundation
Email ****@gmail.com
Avg Length 29 min Format Medium form Get Email Contact

27. Project CASK Podcast

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The Project CASK Podcast is a place for the CASK community to gather to share our stories, deepen our connections, learn from each other and from others, and hopefully find laughter and joy as we travel this rare disease journey together.more Producer/Network Project CASK
Email ****@projectcask.org
Estimated Monthly Listeners 100-1k
Recent Guests Hitomi Kubo, Louis Konz
Apple Rating 5/5Apple Reviews 4 Avg Length 26 min Format Medium form Get Email Contact

28. The Hyper IgM Podcast

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In the world of rare diseases, amplifying patient voices is crucial for empowering others to make informed treatment decisions and for providing insights to healthcare professionals and researchers about the patient experience and its impact on quality of life. With conditions like Hyper IgM Syndrome, a rare immune deficiency affecting one in a million individuals, the majority of those affected are children. Yet, narratives in the pediatric rare disease realm often stem from the perspectives of parents, medical professionals, or adult survivors...more Producer/Network Ezra Fineman
Recent Guest Marcus
Apple Rating 5/5Apple Reviews 1 Avg Length 29 min Format Medium form Get Email Contact

29. Rare Candor

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Welcome to Rare Candor, a podcast for people who live with and love someone with a rare disease. We'll talk about medications, accessing care, navigating everyday lift, policy and insurance issues, and more. Living with a rare disease can be an exhausting, annihilating, scary, lonely, unpredictable and invisible - for the people with their disease and those that love them. We promise not to make you depressed, peppered in humor is guaranteed, albeit likely dark humor - but we trust you will appreciate the rare candor.more Producer/Network Pam Squires & Sarah Jones
Email ****@eosinophilraredisease.org
Estimated Monthly Listeners 100-1k
Recent Guests Jesse, Dr. Jessica Most +9 more
Apple Rating 5/5Apple Reviews 4 Avg Length 33 min Format Medium form Get Email Contact

30. Investigating HLH

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Investigating HLH, brought to you by Sobi Inc., is a podcast that takes a deep dive into the complex world of hemophagocytic lymphohistiocytosis, or HLH. As a rare and fatal disease that was once considered incurable, HLH presents with a range of severe signs and symptoms that make diagnosis difficult. Join us as we discuss insights about HLH from all angles with various experts in the field of hematology-oncology who have helped to advance the understanding and treatment of this devastating disease...more Producer/Network Sobi Inc.
Email ****@amazemedialabs.com
Estimated Monthly Listeners 100-1k
Apple Rating 5/5Apple Reviews 3 Avg Length 27 min Format Medium form Get Email Contact

31. The Roadmap to Rare

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This is the Roadmap to Rare. Hosted by OCNDS parent Eric Finn, this podcast explores the reality of the rare-disease journey—sharing hope through real stories, real challenges, and research. This is our rare disease roadmap.Every rare disease journey is different, but no family should have to navigate it alone.On Roadmap to Rare, Eric sits down with parents, advocates, clinicians, researchers, and leaders in the rare disease community to talk about what the path really looks like—from diagnosis to advocacy, research breakthroughs, and everything in between.Together, these conversations s..more Producer/Network CSNK2A1 Foundation Podcast
Email ****@csnk2a1foundation.org
Avg Length 31 min Format Medium form Get Email Contact

32. RareAF - Advocacy and Facts

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RareAF Advocacy and Facts brings real talk to the world of rare diseases. Each episode dives into life with rare and chronic conditions — breaking down the facts, the humanity behind specialty care and the advocacy still needed. Hosted by passionate voices from the rare disease community, Amanda Christian and Brian Rodgers. Whether you're living rare, working in healthcare, or just curious, we're here to keep it honest and hopeful. Supported by Heritage Specialty Pharmacy, it's raw, it's real, and it's RareAF.more Producer/Network RareAF
Email ****@gmail.com
Estimated Monthly Listeners 100-1k
Recent Guests Shelbi Conover, Shannon Schulz
Apple Rating 5/5Apple Reviews 5 Avg Length 39 min Format Medium form Get Email Contact

33. Chasing the Light

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Welcome! It is my pleasure to introduce 'Chasing the Light,' a podcast created to serve as my personal journal of faith, perseverance, and resilience after being born into darkness. Run alongside during my race against blindness as I embark on a promising and life-changing adventure from darkness to light! I will be sharing my thoughts, emotions, and accounts throughout a clinical treatment trial for my rare blinding inherited retinal disease, Lebers Congenital Amaurosis as I balance marriage, motherhood, and a career...more Producer/Network Lindsey Rambo
Email ****@yahoo.com
Estimated Monthly Listeners 100-1k
Recent Guest Lucas
Apple Rating 5/5Apple Reviews 6 Avg Length 32 min Format Medium form Get Email Contact

34. The KCNA2 & Rare Epilepsy's Podcast

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Welcome to KCNA2 & Rare Epilepsy Podcast, a podcast created for the people living this journey and the people working to understand it.Each episode, hosted by Dr. Nancy Musarra, invites listeners into honest, generous, and sometimes vulnerable conversations with parents, researchers, clinicians, and board members to discuss the daily experiences of living with KCNA2, seizures, and other rare forms of epilepsy. You'll hear stories, questions, and hopes from people who understand and are living with this disease...more Producer/Network kcna2epilepsy
Apple Rating 5/5Apple Reviews 1 Avg Length 38 min Format Medium form Get Email Contact

35. Herding Hope: Zebra and TGCT Talk

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Herding Hope is a podcast all about finding connection, courage, and community in the world of TGCT and rare diseases. Hosted by Sydney and Virginia, each episode explores the shared experiences that unite rare disease patients alongside the unique journeys that make every story powerful. Through honest conversations with patients, clinicians, and advocates, Herding Hope shines a light on what it's really like to live with TGCT and the hope that grows when stories are shared.Created by TGCT Support, this podcast is a place for learning, listening, and lifting each other up. TGCTSupport.orgmore Producer/Network TGCT Support
Estimated Monthly Listeners 100-1k
Apple Rating 5/5Apple Reviews 4 Avg Length 35 min Format Medium form Get Email Contact

36. Rare Mind Talks

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'Rare Mind Talks' podcast explores how Education, AI, data, and innovation are transforming healthcare for rare diseases. Hosted by André Correia, a digital transformation leader and rare disease advocate, it aims to simplify complex topics, inspire research, and connect experts to improve lives. Learn more at https://www.theraremind.com orFollow us on instagram @theraremindtalksmore Producer/Network Andre Correia
Email ****@gmail.com
Recent Guests Francisco Aguiar, Ada Lio +4 more
Apple Rating 5/5Apple Reviews 1 Avg Length 29 min Format Medium form Get Email Contact

37. MESO: The Mesothelioma Podcast

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MESO: The Mesothelioma Podcast is a supportive, medically informed, and deeply human show dedicated to helping families navigate life after a mesothelioma diagnosis. Hosted by patient advocate, Dave Foster , the podcast brings together the voices of doctors, survivors, caregivers, and leading experts to deliver clarity, guidance, and hope when it's needed most...more Producer/Network MesotheliomaPodcast.com
Estimated Monthly Listeners 100-1k
Recent Guests Lisa Erickson, Ellie Erickson +3 more
Apple Rating 5/5Apple Reviews 8 Avg Length 24 min Format Medium form Get Email Contact

38. Cure MFM13 - The Podcast

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Welcome to the Cure MFM13 Podcast , a series dedicated to raising awareness and sharing critical information about MFM13 Myopathy . This podcast is designed for individuals and families affected by this rare neuromuscular condition, as well as clinicians and researchers working to make a difference. In each episode, we focus on one key topic related to MFM13 Myopathy — whether it's the latest advancements in research , genetic testing , diagnosis , management strategies , or insights from the rare disease space . We'll discuss recent publications, dive deep into important clinical topics, and explore the latest findings in the field...more Producer/Network Cure MFM13 Org
Email ****@curehspb8.org
Avg Length 16 min Format Short form Get Email Contact

39. HypoPara Unscripted

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HypoPara Unscripted brings together experts and patients for meaningful, honest, candid conversations about living with hypoparathroidism, a rare condition of the hypoparathyroid glands (4 tiny endocrine glands in the neck) which which make a hormone that regulates calcuim and phosphorus levels in the blood. From treatments and advances to real life challenges and resilience, the goal of this podcast is simple: to educate, empower and connect the hypopara community...more Producer/Network hypoparaunscripted
Estimated Monthly Listeners 100-1k
Apple Rating 5/5Apple Reviews 9 Avg Length 26 min Format Medium form Get Email Contact

40. Mast Cast: An SM Podcast

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A podcast where your hosts Candice and Rachael explore the complexities of living with a rare, chronic disease through personal experience, patient guests' stories, care-giver perspectives, insights from specialists, and updates from the research and advocacy communities - with the purpose of bringing knowledge, connection, and hope to those affected by systemic mastocytosis and related conditions.more Producer/Network Mast Cast: An SM Podcast
Email ****@mastcastpod.com
Estimated Monthly Listeners 100-1k
Apple Rating 5/5Apple Reviews 3 Avg Length 66 min Format Long form Get Email Contact

41. Rare Research Report

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Rare Research Report features summaries of recent scientific publications from the Rare Diseases Clinical Research Network, which is funded by the National Institutes of Health. The network includes 20 active consortia—teams of researchers, patients, and clinicians—each focused on a group of rare disorders. Join us for new episodes each month.Learn more about the RDCRN: https://www.rarediseasesnetwork.orgmore Producer/Network RDCRN
Email ****@cchmc.org
Avg Length 2 min Format Bite size Get Email Contact

42. Rarely Discussed

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Welcome to Rarely Discussed, an American Porphyria Foundation Podcast, with your hosts Andrew McManamon and Nicole Castellano. We both have Porphyria, which is a rare disease. As scientifically different as rare diseases can be, we share many similarities on how it affects our lives. We're here to open the discussion and give the porphyria and rare disease community a safe place to connect, learn and heal. Being rare can feel lonely and isolating, but we're stronger together.more Producer/Network RarelyDiscussed
Email ****@porphyriafoundation.org
Estimated Monthly Listeners 100-1k
Recent Guests Ginger Davis, Dr. Bo Zhao +9 more
Apple Rating 5/5Apple Reviews 8 Avg Length 59 min Format Long form Get Email Contact

43. GENEration Hope

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In-depth conversations with scientists, clinicians, advocates, and families at the front lines of rare disease, gene therapy, and genomic medicine. Hosted by rare disease parent and filmmaker Ron Kleiman, GENEration Hope explores the science, the ethics, and the human stories behind the fight to give children with genetic disorders a better future.more Producer/Network GENEration Hope - Ron Kleiman
Email ****@gmail.com
Recent Guests Dr. Katy Phelan, Monica Coenraads
Avg Length 50 min Format Long form Get Email Contact

44. Cannon Unbroken

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At just 18 months old, Cannon Sittig, was diagnosed with hypophosphatasia (HPP), a rare metabolic bone disease caused by a genetic mutation. Living with HPP means facing daily challenges most people can't imagine, but Cannon's story is far from over. It's just the beginning.Cannon Unbroken shares powerful, real-life stories of resilience in the face of life's toughest challenges, especially those related to HPP...more Producer/Network Cannon Sittig
Recent Guest Bill Raftery
Apple Rating 5/5Apple Reviews 1 Avg Length 17 min Format Short form Get Email Contact

45. Behind the Episode: An Advocacy Podcast by Cure AHC

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A podcast created for the AHC community, by the AHC community. Bringing you information that us hopeful, digestible, and supportive! Each episode will take you behind the moments of life with AHC, sharing research updates, insights from specialists, guidance on patient care, stories and support for families walking this rare disease journey.more Producer/Network Cure AHC
Apple Rating 5/5Apple Reviews 1 Avg Length 76 min Format Long form Get Email Contact

46. These Kids Can't Wait

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Welcome to These Kids Can't Wait. A podcast that brings you closer to researchers, doctors, and advocates working to drive progress and raise awareness for rare diseases.
Producer/Network Erin Hubbard
Estimated Monthly Listeners 100-1k
Recent Guests Cyndi Frank, Kristin Andrus +3 more
Apple Rating 5/5Apple Reviews 2 Avg Length 45 min Format Long form Get Email Contact

47. The LCC Circle

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We share stories, successes, and scientific insights from the world of ultra-rare diseases. Through heartfelt conversations and expert insights, we bring together families, researchers, and advocates to illuminate the path toward understanding and treating LCC/Labrune Syndrome.more Producer/Network Ashley
Estimated Monthly Listeners 100-1k
Apple Rating 5/5Apple Reviews 4 Avg Length 30 min Format Medium form Get Email Contact

48. Let's Talk LAM

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If you live with LAM or know someone who does, 'Let's Talk LAM' is the podcast for you.I'm Emma, I'm in my 30s, I live in London, and I'm learning to live with lymphangioleiomyomatosis, or LAM for short. I was diagnosed aged 32 following a spontaneous pneumothorax. Each episode I'll be talking about living with LAM alongside people that are important and inspirational to me, including my friends, family, and other women with LAM.I aim to delve into topics such as diagnosis, managing symptoms, medications, hospital stays, navigating procedures and surgeries, and mostly just day to day living, laughing, and loving when you have a chronic, invisible, and very rare disease. Please share, follow, and comment get..more Producer/Network Emwills
Estimated Monthly Listeners 100-1k
Apple Rating 5/5Apple Reviews 2 Avg Length 50 min Format Long form Get Email Contact

49. Rarely Heard

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Rarely Heard is a rare disease podcast series that exists to share the stories, experiences, knowledge, insights and voices of those living with some of the world's rarest diseases as these should not be Rarely Heard, but widely shared.more Hosts Philippa Norman, Ilmarie Braun
Producer/Network Beacon
Email ****@findacure.org.uk
Estimated Monthly Listeners 100-1k
Recent Guests Nick Meade, Alessandra Gaeta +13 more
Apple Rating 5/5Apple Reviews 9Twitter 12KInstagram 2K Avg Length 59 min Format Long form Get Email Contact

50. Rare Kidney Source

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Your Podcast for Rare Kidney ConversationsLife with a rare kidney disease can be complex, isolating, and often misunderstood. Rare Kidney Source brings together voices from across the community to inform, inspire, and connect people living with rare kidney diseases such as C3 glomerulopathy (C3G) and primary immune-complex membranoproliferative glomerulonephritis (IC-MPGN)...more Producer/Network BloodStream Media
Email ****@bloodstreammedia.com
Apple Rating 5/5Apple Reviews 1 Get Email Contact

51. From Clues to Care: Improving Recognition and Treatment of Alpha-Mannosidosis

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Alpha mannosidosis (AM) is a rare, progressive lysosomal disorder with a broad and heterogeneous clinical phenotype that can evolve across the lifespan. Drawing on the 2024 Global Delphi Consensus Recommendations and other recent evidence, this activity focuses on practical, clinician oriented strategies for baseline and longitudinal assessment, use of enzyme replacement therapy and hematopoietic stem cell transplantation, monitoring treatment response and disease progression, and the coordination of interprofessional, multidisciplinary care essential for patient management.more Producer/Network Annenberg Center for Health Sciences
Email ****@annenberg.net
Avg Length 11 min Format Short form Get Email Contact

52. Gaucher Voices

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A series of podcasts looking at different aspects of Gaucher Disease, a rare Lysosomal Storage Disorder (LSD). Each 30-minute episode will look at a different aspect of living with Gaucher Disease from the patient's perspective, with additional expert information from medical practitioners, scientists and researchers.more Producer/Network The International Gaucher Alliance
Estimated Monthly Listeners 100-1k
Apple Rating 5/5Apple Reviews 2 Avg Length 38 min Format Medium form Get Email Contact

53. Thriving in The Rare: Journeys of Resilience and Growth

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Thriving in the Rare is a podcast dedicated to amplifying the voices of individuals living with rare diseases and complex chronic conditions. Through candid conversations with patients, caregivers, and advocates, this series explores what it truly means to move forward in the face of uncertainty, loss, and change.Each episode highlights personal journeys of adaptation—navigating diagnosis, redefining identity, managing invisible symptoms, and finding new ways to live meaningful, connected lives...more Get Email Contact

54. The Macie's Mission Podcast

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Listen along as we share our journey with Pompe disease and how Macie's Mission came to be. Our message is simple— spread awareness and remind families navigating life with rare diseases that they are not alone.more Producer/Network Macie’s Mission
Estimated Monthly Listeners 100-1k
Recent Guests Julie Duenges, Peggy
Apple Rating 5/5Apple Reviews 3 Avg Length 24 min Format Medium form Get Email Contact

55. The PMP Project

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Imagine going through life at 38 and then suddenly being hit with a cancer diagnosis. This is exactly what happened to your host Faye Louise when she was diagnosised with a very rare form of appendix cancer. On this podcast you will learn more about the disease and Faye's own battle. She will also be joined by other survivors. This podcast is one of a kind bringing hope to everyone out there facing cancer. A reminder to never give up and you are not alone.Hear how other survivors aswell as Faye herself have navigated this life changing diagnosis.more Producer/Network Faye Louise in collaboration with Ray Huggins of Think Innovate Deliver Media
Email ****@thinkinnovatedeliver.co.uk
Recent Guests Zoe, Terry Saint +23 more
Apple Rating 5/5Apple Reviews 1 Avg Length 50 min Format Long form Get Email Contact

56. March Forward

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Welcome to the March Forward podcast, a space dedicated to the rare disease community. We understand the unique challenges you face, from the 'diagnostic odyssey' to navigating complex treatments and the emotional toll of caregiving. Our podcast aims to provide clear, trustworthy, and in-depth information, fostering hope and support as we explore the latest advancements in rare disease research and care.more Producer/Network March.ai
Avg Length 20 min Format Short form Get Email Contact

57. Rare and Real

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Rare & Real is a bold, unfiltered podcast where rare disease meets real life — and nothing's off the table. Hosted by Nate Milam II and Carter Hemion, queer rare disease advocates, storytellers, and health equity champions, this show is built for the community and by the community.Whether you're a patient, caregiver, provider, ally, or just trying to understand what it means to survive and show up at the margins — you'll find yourself here. We talk about it all: sex and dating, mental health, grief, growing up rare, medical gaslighting, joy, transition care, and everything in between.more Producer/Network Stripes of Solidarity
Estimated Monthly Listeners 100-1k
Apple Rating 5/5Apple Reviews 2 Avg Length 48 min Format Long form Get Email Contact

58. The MEN1 Mosaic

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Welcome! This podcast's mission is to raise the quality of conversation in MEN1, opening the floor to diverse, unique and much needed perspectives, each a valuable piece in this 'mosaic.' With guest speakers encompassing patients & practitioners from all over the health-sphere, join a curious, open-minded & engaging discussion amongst a different kind of rare-disease community...more Producer/Network Lizzie Dunn
Email ****@gmail.com
Recent Guests Professor Maralyn Druce, Dr Fiona Lalloo +14 more
Apple Rating 5/5Apple Reviews 1 Avg Length 37 min Format Medium form Get Email Contact

59. Beyond the Pain ~ Unbreakable Threads

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Beyond the Pain Unbreakable Threads is a heartfelt mother son podcast sharing the real, unfiltered journey of living with Fabry disease. Together, Ashley and John open up about the struggles, triumphs, and everyday moments that shape their rare story. Through raw conversations and honest reflections, they show how love and resilience can weave unbreakable threads that carry them forward. This podcast isn't just about Fabrys; it's about family, strength, and finding hope beyond the pain.more Producer/Network Beyond the Pain
Email ****@gmail.com
Recent Guest Ashley
Avg Length 50 min Format Long form Get Email Contact

60. Practice Point®: Rare Diseases

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In these podcasts, we dive deep into the world of rare diseases, where every story is unique and every diagnosis a challenge. The episodes highlight the personal journeys of patients and medical professionals as they navigate the complexities of rare conditions. Each episode features expert insights on cutting-edge research, emerging treatments, and the social and emotional aspects of living with a rare disease. These podcasts are your guide to understanding and advocating for those affected by these often misunderstood conditions.more Producer/Network Practice Point Communications
Recent Guests Dr. Angela Hirbe, Amy Armstrong +1 more
Apple Rating 5/5Apple Reviews 1 Avg Length 26 min Format Medium form Get Email Contact

61. CURE SYNGAP1 PODCAST aka SYNGAP10

Website Apple
Over 1,600 families are caring for a loved one with the rare disease 'SynGAP' resulting from a variant of the SYNGAP1 gene. This weekly podcast is for them. -A quick summary of the latest news in the space. The host is Mike Graglia, co-founder & managing director of CURE SYNGAP1. CURE SYNGAP1 is a parent-led public charity in the US that strives to accelerate research into treatments for SYNGAP1 so that we can help our loved ones in a timeframe that matters. Learn more at https://cureSYNGAP1.orgmore Producer/Network Syngap Research Fund, 501(c)(3)
Estimated Monthly Listeners 1k-10k
Apple Rating 5/5Apple Reviews 96 Get Email Contact

62. Stronger Every Day

Website Apple Spotify
I quit my law job to be at home with my kids. Turns out our daughter Tess has a rare genetic disorder called Hao-Fountain Syndrome, or USP7. She's different. And now, so is everything else. #USP7 #HaoFountainSyndrome #autismmore Host Bo Bigelow
Email ****@gmail.com
Estimated Monthly Listeners 1k-10k
Apple Rating 5/5Apple Reviews 85Facebook 220Twitter 252 Since Jan 2015 Get Email Contact

63. The Lung Lab

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The Lung Lab is a podcast exploring how we are redefining rare and progressive lung disease. From how it is detected, to how it is measured, to how it is ultimately treated.Hosted by Elizabeth Estes, Executive Director of the Open Source Imaging Consortium (OSIC), the series brings together clinicians, scientists, and technologists working at the intersection of imaging, data, and disease...more Producer/Network OSIC
Email ****@osicild.org
Apple Rating 5/5Apple Reviews 1 Avg Length 14 min Format Short form Get Email Contact

64. Demystifying NMO & MOG

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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.more Host Brian Dawson
Producer/Network The Sumaira Foundation
Email ****@connorbjudgefoundation.org
Estimated Monthly Listeners 1k-10k
Apple Rating 5/5Apple Reviews 25 Avg Length 37 min Format Medium form Get Email Contact

65. Wait, How Do You Spell That? A Rare Disease Podcast

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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.more Host Colby Rogers
Producer/Network Patient Worthy
Email ****@patientworthy.com
Estimated Monthly Listeners 1k-10k
Recent Guests Lisa Batista, Brenda Snow +8 more
Apple Rating 5/5Apple Reviews 19Facebook 15KTwitter 8.1KInstagram 11.4K Avg Length 37 min Format Medium form Get Email Contact

66. Smiles Included: Navigating through life with our rare disease superheroes

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As a mom of a son with Skraban-Deardorff Syndrome, a WDR26-related intellectual disability, I started listening to podcasts as a form of therapy and to get advice for how to navigate through the emotions and questions that come with having a child with a rare disease diagnosis. I started this podcast for those impacted by Skraban-Deardorff, and other rare diseases, as a way to share stories, ask and answer questions, get advice and have a platform where we can work to understand together what the diagnosis means and how we can support each other...more Host Emily Beauclair
Email ****@gmail.com
Estimated Monthly Listeners 1k-10k
Apple Rating 4.9/5Apple Reviews 16 Avg Length 43 min Format Long form Get Email Contact

67. Not So Rare Podcast

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It is estimated that over 300 million people are affected globally by rare diseases. Although each rare disease only affects a small group of individuals, we believe that by sharing our experiences living with a rare disease, we can help the broader rare disease community with their rare disease journeys. Join us, Taylor and Liz, as we further explore the impact of rare diseases on our lives. Together we are 'Not so Rare!' Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram by following @NotSoRarePodcast as well as on Facebook by searching for Not So Rare Podcast...more Hosts Taylor, Liz
Producer/Network Taylor and Liz
Email ****@gmail.com
Estimated Monthly Listeners 1k-10k
Apple Rating 4.9/5Apple Reviews 16Facebook 193Instagram 181 Avg Length 28 min Format Medium form Get Email Contact

68. Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient Navigation

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We talk to rare disease experts about treatments, trials, and new developments, and rare disease patients share their experiences and advice for staying positive in the face of diagnosis. Learn more about the RareShare.org community, and how you can get involved. Get in touch if you are an expert or patient who would like to be on the podcast! Email us at ****@raregenomics.orgmore Host Rare Genomics Institute, Inc.
Producer/Network Rare Genomics Institute
Email ****@raregenomics.org
Estimated Monthly Listeners 100-1k
Apple Rating 4/5Apple Reviews 2 Avg Length 42 min Format Long form Get Email Contact

69. The Rare hour with Christopher Velona

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Join us for a one-hour rare disease community support group. Here we will discuss the topics that affect your daily life in rare diseases as well as special needs. Being a parent is hard but having a child in rare disease takes a special kind of person and the journey is filled with potholes along the way. The pathway may never be clear, but together we can navigate by supporting each other. P.S. we are not a glum lot!more Host Christopher Velona
Email ****@projectsebastian.org
Estimated Monthly Listeners 100-1k
Apple Rating 4.2/5Apple Reviews 5 Avg Length 29 min Format Medium form Get Email Contact

70. Rare in Common: the podcast

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Rare in Common is a podcast about the unique stories of people affected by rare disease. Host Andra Stratton, a rare disease advocate, speaks with different members of the rare disease community, including patients, caregivers, healthcare professionals, and researchers. Join us as we tackle topics such as FDA approvals, national awareness campaigns, finding hope and support within the rare community, and the extraordinary challenges of living with a rare disease. Click. Listen. Feel.more Producer/Network Cambridge BioMarketing
Email ****@gmail.com
Estimated Monthly Listeners 100-1k
Apple Rating 5/5Apple Reviews 6 Avg Length 27 min Format Medium form Get Email Contact

71. Cystinosis Rare: A Journey Into the Unknown - Season 2

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A podcast for the Cystinosis community and general public, sharing experiences and both educating and supporting the affects of this rare genetic disease.Credits:Steve Schleuder, Jana Healy, Sara Healy, Cheryl SimoensHosts: Steve Schleuder, Jana Healy, Sara HealyWANT TO LISTEN TO SEASON 1! Check it out here: https://open.spotify.com/show/2mQfY55IraUvJppRazO8Tk?si=LNp83ZRgTUmd8BfuN8T0lgmore Producer/Network CRN: Adult Leadership Advisory Board
Email ****@cystinosis.org
Apple Rating 5/5Apple Reviews 1Facebook 2.4KTwitter 796Instagram 1.6K Avg Length 56 min Format Long form Get Email Contact

72. Newborn Screening SPOTlight Podcast

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This podcast is about the advancement of rare disease research told by health professionals, researchers, parents and advocates. This podcast is for you to learn how newborn screening research saves the lives of babies every day through discoveries of new technologies and treatments. You will hear stories from experts who treat babies, the families who care for them, and the researchers who make it all happen. We are your co-hosts, Drs. Kee Chan and Amy Brower. We are from the Newborn Screening Translational Research Network (also known NBSTRN)...more Host Dr. Amy Brower
Email ****@acmg.net
Estimated Monthly Listeners 100-1k
Apple Rating 4.7/5Apple Reviews 9Facebook 811Twitter 584 Avg Length 43 min Format Long form Get Email Contact

73. Signalise: a Dazzle4Rare Podcast

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The Dazzle4Rare event and Signalise podcast amplify the voices of rare disease and associated communities by sharing their stories, new, events, and more. Working together, we have strength in numbers, amplifying our critical messages. We feature guests and discuss relevant topics for rare disease patients, caregivers, and those in the URCIID community.more Producer/Network Kimberly Thomas-Tague
Email ****@dazzle4rare.net
Estimated Monthly Listeners 100-1k
Apple Rating 5/5Apple Reviews 2Facebook 969Twitter 1.4KInstagram 1.1K Avg Length 22 min Format Medium form Get Email Contact

74. Rarebase Remarks

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Talking to stakeholders, scientists, patients about rare disease research.
Producer/Network Rarebase
Email ****@rarebase.com
Apple Rating 5/5Apple Reviews 1Facebook 108Twitter 374Instagram 674 Avg Length 59 min Format Long form Get Email Contact

75. I Care for Rare

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A podcast for parents and families of people living with rare diseases in Ontario. I Care for Rare is a social advocacy campaign, designed to give individuals, families and caregivers living with rare diseases a collective voice for system healthcare AND community support reform.more Host Sandra Markus
Email ****@sandramarkus.biz
Facebook 167Twitter 13Instagram 318 Avg Length 39 min Format Medium form Get Email Contact

76. Rare Together

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Welcome to Rare Together, the podcast series produced by LDA Research. Join us as we bring together individuals living with rare diseases to share their personal stories and experiences in a series of one-to-one conversations.Rare Together offers individuals, including those living with rare diseases, caregivers, family members, and healthcare professionals, the opportunity to hear from others affected and gain deeper insights into the unique complexities associated with different rare diseases.Read more and apply to be a future guest:https://ldaresearch.com/rare-togethermore Producer/Network LDA Research
Email ****@ldaresearch.com
Estimated Monthly Listeners 100-1k
Apple Rating 5/5Apple Reviews 6Facebook 871Twitter 42 Avg Length 34 min Format Medium form Get Email Contact

77. Rare Diseases, Real Stories

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Rare Diseases, Real Stories is a special podcast series that celebrates families who are transforming the world of rare diseases. In each episode, hear from parents about the challenges they face before and after their child is diagnosed, and the grief, strength, love and unwavering hope that guide them. Through their stories, you'll discover how their collaboration with UMass Chan Medical School researchers is driving innovation and fostering new rare disease treatments. Prepare to be moved, motivated and inspired by the real-life champions who are shaping the future of rare disease advocacy and research, one family at a time...more Producer/Network UMass Chan Medical School
Email ****@umassmed.edu
Estimated Monthly Listeners 100-1k
Apple Rating 5/5Apple Reviews 6 Avg Length 19 min Format Short form Get Email Contact

78. Inside Rare Diseases On a mission for life-changing answers

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There are over 7,000 rare diseases affecting over 350 million patients around the world and each patient is unique, with a different genetic makeup and individual medical needs. Join host Ben Legg and rare disease expert Prof. Peter Bauer every month as they dive into the complex world of rare diseases. Throughout this series, they will be joined by advocates, physicians, researchers, and more to explore unique and informative perspectives on the challenges and successes of the rare disease community...more Hosts Prof. Peter Bauer, Ben Legg
Producer/Network Prof. Peter Bauer
Email ****@centogene.com
Estimated Monthly Listeners 100-1k
Apple Rating 5/5Apple Reviews 2Twitter 2.6K Avg Length 36 min Format Medium form Get Email Contact

79. Never Give Up: A Rare Disease Podcast

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I'm Kevin Alexander, and I've been a professional storyteller for over 20 years. I'm also an adult living with the rare disease Phenylketonuria, or PKU. Since 2012 I've been traveling the world advocating for PKU, newborn screening, and rare disease awareness. Living with a rare disease can be a heavy burden, so on this podcast, I share thoughts, reflections, and stories to motivate you on your journey.more Host Kevin Alexander
Email ****@pkujournal.com
Avg Length 21 min Format Medium form Get Email Contact

80. Into the Skid Podcast

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A podcast centered around people battling rare diseases and rare health circumstances hosted by a journalist also battling several rare conditions.
Host Aaron Ace Carter
Producer/Network Into the Skid Podcast
Email ****@phillynews.com
Estimated Monthly Listeners 100-1k
Apple Rating 5/5Apple Reviews 2Instagram 562 Avg Length 52 min Format Long form Get Email Contact

81. My rare disease

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Welcome to 'My rare disease' podcast. This is a platform where I raise awareness of something that affects 1 in 15 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.From being diagnosed with a rare disease myself at 10 weeks old, it has given me the motivation to give others in the rare disease community an opportunity to share their thoughts and experiences.more Host Katy Baker
Email ****@gmail.com
Estimated Monthly Listeners 100-1k
Apple Rating 5/5Apple Reviews 4 Avg Length 41 min Format Long form Get Email Contact

82. Rare with Flair

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Casey + Cassandra are a pair of best friends with the same rare disease. Their goal is simple: sharing their lives to showcase the beauty and normalcy in disability, while having fun together. They'll also touch on accessibility, friendships, style, and everything in between as they live their best, rare, lives! For show notes, go to rarewithflair.commore Hosts Casey Greer, Cassandra Mendez
Producer/Network Casey Greer and Cassandra Mendez
Email ****@rarewithflair.com
Estimated Monthly Listeners 1k-10k
Recent Guests Grant, Cass
Apple Rating 4.9/5Apple Reviews 99Facebook 490Twitter 434Instagram 1.2K Avg Length 60 min Format Long form Get Email Contact

83. I'm Aware That I'm Rare: the phaware® podcast

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I'm Aware That I'm Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death. Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease.more Producer/Network phaware global association
Email ****@phaware.global
Estimated Monthly Listeners 1k-10k
Recent Guests Florin Dumitrescu, Rey Adam Rodriguez +9 more
Apple Rating 5/5Apple Reviews 20 Avg Length 13 min Format Short form Get Email Contact

84. Real Talk: Eosinophilic Diseases

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Eosinophils are a type of white blood cell that play a role in immune responses and help fight off infections. When these cells build up and cause inflammation in the digestive system, tissues, organs, and/or bloodstream, without a known cause, it may be the result of an eosinophil-associated disease. Join the American Partnership for Eosinophilic Disorders (APFED) for a series of conversations with researchers, clinicians, patients, and other community members as we discuss practical strategies for disease management and treatments, research, and other topics of interest.more Producer/Network American Partnership for Eosinophilic Disorders
Email ****@apfed.org
Estimated Monthly Listeners 100-1k
Recent Guests Angelica Lackey Mirzoca, Jessica Grady +7 more
Apple Rating 4.9/5Apple Reviews 9 Avg Length 39 min Format Medium form Get Email Contact

85. Hope Charities

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Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.
Producer/Network Jonathan James
Email ****@hope-charities.org
Estimated Monthly Listeners 100-1k
Recent Guests Kim Czubaruk, Cindy Komar +5 more
Apple Rating 4.8/5Apple Reviews 5Facebook 20.4KTwitter 1.9KInstagram 1.5K Avg Length 68 min Format Long form Get Email Contact

86. HippraConnects

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Welcome to HippraConnects where we give a voice to those battling complex illnesses, challenging medical conditions or rare diseases and the healthcare providers who treat them as well as the support system that nurtures and sustains them.more Producer/Network Hippra Podcast
Email ****@hippra.com
Estimated Monthly Listeners 100-1k
Recent Guests Stephanie Riordan, Laura Byer +8 more
Apple Rating 5/5Apple Reviews 5 Avg Length 28 min Format Medium form Get Email Contact

87. DNA Today: A Genetics Podcast

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D iscover N ew A dvances in the world of genetics, from technology like CRISPR to rare diseases to new research. For 14 years, multi-award winning podcast 'DNA Today' has brought you the voices of leaders in genetics. Host Kira Dineen brings her genetics expertise to interview geneticists, genetic counselors, patient advocates, biotech leaders, researchers, and more. ***Best Science and Medicine Podcast Award Winner (2020, 2021 and 2022)*** Learn more (and stream all 400+ episodes) at DNAtoday.com. You can contact the show at ****@DNAtoday.com ...more Host Kira Dineen
Email ****@dnatoday.com
Estimated Monthly Listeners 10k-50k
Recent Guests Dr. Christine Eng, Chris Sands +21 more
Apple Rating 4.7/5Apple Reviews 228 Avg Length 33 min Format Medium form Get Email Contact

88. Two Disabled Dudes

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The 2DD podcast is about setting sights beyond the challenges in your life and dreaming big, making a plan, and then executing like mad. You are guaranteed an emotional rollercoaster, and practical thoughts that you can apply to your life with this podcast.Hosts Sean and Kyle are both affected by a rare disease called Friedreich's ataxia (FA). FA affects their balance and coordination, significantly limiting their physical abilities. However both dudes have completed several long distance bike rides including 'The World's Toughest Bike Race' - Race Across America (RAAM)...more Hosts Kyle Bryant, Sean Baum stark
Producer/Network The Dudes
Email ****@rideataxia.org
Estimated Monthly Listeners 10k-50k
Recent Guests Joshua Resnikoff, Debbie Drell +15 more
Apple Rating 5/5Apple Reviews 199 Avg Length 46 min Format Long form Get Email Contact

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