60 Best Rare Disease Podcasts

1. 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 of disability, while having fun together. They'll also touch on accessibility, friendships, style, and everything in between as they live their best, rare, lives!MORE Producer/Network Casey Greer and Cassandra Mendez
Email ****@rarewithflair.com
Apple Rating 4.9/5Facebook 490Twitter 469Instagram 1.2K Avg Length 62 min Get Email Contact Get Influential Podcasters ContactsGet access to 100k active Podcasters, Influencers in 1500 niche categories.Get targeted media contact list in your niche at your fingertips so you can focus on running your campaign.Email us the categories of Podcasters you want to reach out for your marketing campaign at anuj@feedspot.com Copy email. We'll share active Podcasters list with verified email contacts in an Excel or CSV format.Email us

2. P4A Let's Talk Rare

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Welcome to P4A Let's Talk Rare, a monthly podcast highlighting the most important developments in the world of rare diseases orphan drug, cell and gene therapy, hosted by Georgie Rack and Owen Bryant of Partners For Access. To find out more about Partners.MORE Producer/Network Partners4Access
Email ****@partners4access.com
Apple Rating 5/5Twitter 189 Avg Length 19 min Get Email Contact

3. 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
Apple Rating 5/5 Avg Length 30 min Get Email Contact

4. The Rare Disease Podcast 4 Medics

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Interviews with patients, clinicians, advocates, students, researchers focusing on rare disease in clinical medicine. This podcast is brought to you by Medics4RareDiseases who are asking medical professionals to #daretothinkrare in order to improve diagnosis, clinical care and research in this neglected but really important field of medicine. 3.5 million people in the UK live with a rare disease so while each disease is individually rare, together rare diseases are common.MORE Host Lucy McKay
Producer/Network Medics4RareDiseases
Email ****@m4rd.org
Apple Rating 5/5Facebook 1.5KTwitter 5.2KInstagram 3.2K Avg Length 39 min Get Email Contact

5. Patient Empowerment Program

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Join the nano-rare disease community! Interviews feature 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
Apple Rating 5/5Facebook 501Twitter 1.2KInstagram 936 Avg Length 39 min Get Email Contact

6. 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.MORE Host Colby Rogers
Producer/Network Patient Worthy
Email ****@patientworthy.com
Apple Rating 5/5Facebook 12.2KTwitter 8.1KInstagram 5.6K Avg Length 34 min Get Email Contact

7. Few & Far Between

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Welcome to Few & Far Between! Chris O'Brien, CEO of Biorasi, is your host for conversations on the cutting edge - from clinical research and policymakers to rare disease advocates and industry leaders.MORE Producer/Network Chris O'Brien
Email ****@biorasi.com
Apple Rating 5/5Facebook 369Twitter 525Instagram 673 Avg Length 41 min Get Email Contact

8. 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!MORE Producer/Network PSC Partners Seeking a Cure
Email ****@pscpartners.org
Apple Rating 5/5Facebook 4.2KTwitter 2.5K Avg Length 31 min Get Email Contact

9. Rare Disease Discussions

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News and clinical perspective including CME programs focused on rare diseases. CheckRare focuses on rare and neglected diseases.
Producer/Network Peter Ciszewski, CheckRare
Email ****@biotech5.com
Apple Rating 5/5Twitter 3.1K Avg Length 28 min Get Email Contact

10. The Pickle Jar

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THE PICKLE JAR PODCAST - Inspiring stories of triumph and perseverance of people living with chronic illness. Jill's personal story of living with a rare autoimmune disease, Addison's Disease. Her mission is to advocate, educate and empower people living with Addison's Disease and other invisible illnesses to live their best lives.MORE Host Jill Battle
Producer/Network Jill Battle
Email ****@rogers.com
Apple Rating 5/5 Avg Length 18 min Get Email Contact

11. Cystinosis Rare

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A podcast for the Cystinosis community and general public, sharing experiences and both educating and supporting the effects of this rare genetic disease.
Producer/Network CRN: Adult Leadership Advisory Board
Email ****@cystinosis.org
Apple Rating 5/5Facebook 2.1KTwitter 812Instagram 1.3K Avg Length 56 min Get Email Contact

12. Hope Charities

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Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.
Producer/Network Jonathan James
Email ****@hope-charities.org
Apple Rating 4.8/5Facebook 20.3KTwitter 1.9KInstagram 1.3K Avg Length 57 min Get Email Contact

13. 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
Facebook 6.9KTwitter 2.2KInstagram 3.5K Avg Length 49 min Get Email Contact

14. 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.MORE Host Julien Poulain
Producer/Network EURORDIS
Email ****@eurordis.org
Facebook 43.7KTwitter 31.9K Avg Length 9 min Get Email Contact

15. It Happened To Me

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The mission of our podcast is to support you, our listeners, and to create community, as you confront the toughest challenges in life. All of us will experience health hardships. The real question is how we adapt. That is the focus of It Happened To Me, which wants to help you overcome limitations and live a full and satisfying life. Drawing on their health challenges hosts Cathy Gildenhorn and Beth Glassman interview guests who share stories and research to help you succeed in the face of difficult health obstacles. It happened to me. I'm not alone and neither are you.MORE Hosts Cathy Gildenhorn, Beth Glassman
Producer/Network Cathy Gildenhorn, Beth Glassman, and Kira Dineen (DNA Today)
Email ****@gmail.com
Avg Length 42 min Get Email Contact

16. 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
Facebook 3.7KTwitter 284Instagram 1.4K Avg Length 29 min Get Email Contact

17. Inside Rare Diseases

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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 Ben Legg, Prof. Peter Bauer
Email ****@centogene.com
Apple Rating 5/5Twitter 2.7K Avg Length 36 min Get Email Contact

18. Smiles Included

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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 on 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
Producer/Network Emily Beauclair
Email ****@gmail.com
Apple Rating 4.9/5 Avg Length 41 min Get Email Contact

19. 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
Producer/Network Jillian Arnold
Email ****@gmail.com
Apple Rating 5/5Facebook 3K Avg Length 48 min Get Email Contact

20. FIECON Patient Perspectives

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In our series of podcasts, FIECON team members engage with patient advocates and thought leaders to explore the burden, unmet needs, patient journey, and potential future treatments for specific diseases, to gain a deeper understanding of the patient's perspective, particularly for rare diseases. At FIECON, we are dedicated to ensuring that life-changing treatments reach the patients who truly need them, while also increasing awareness and amplifying the patient voice to make a meaningful difference.MORE Producer/Network FIECON
Email ****@fiecon.com
Apple Rating 5/5Twitter 56Instagram 96 Avg Length 31 min Get Email Contact

21. Being Rare Podcast

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Being Rare is an online resource hub and community conversation platform. We'll have intimate and sometimes difficult conversations about living with rare diseases, disability, medical complexities, and special health needs. Popular for our 1-minute episodes, Being Rare offers insight, perspective, and positive reinforcement. Hosted by Sarita Edwards, the world's top patient expert, award-winning advocate, global speaker, and CEO.MORE Host Sarita Edwards
Producer/Network Sarita Edwards
Email ****@theewefoundation.org
Facebook 233Twitter 254Instagram 687 Avg Length 26 min Get Email Contact

22. 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.MORE Host Hope Newport
Producer/Network IFOPA
Email ****@ifopa.org
Facebook 4.9KTwitter 831Instagram 1.3K Avg Length 35 min Get Email Contact

23. 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 guides needed scientific research, diagnosis, and management of abetalipoproteinemia and related hypolipidemias, such as chylomicron retention disease and familial hypobetalipoproteinemia.MORE Hosts Barry Funkhouser, Paul Biderman
Producer/Network ABL+ Foundation
Email ****@gmail.com
Avg Length 29 min Get Email Contact

24. 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
Apple Rating 5/5 Avg Length 14 min Get Email Contact

25. 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.MORE Producer/Network RDCRN
Email ****@cchmc.org
Avg Length 2 min Get Email Contact

26. SYNGAP1 Stories

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SYNGAP1 is a rare disease that affects Ashley Frye's son Nathan. As of January 1, 2024, there are 1,339 people in the world diagnosed with SYNGAP1. There is no treatment. There is no cure. In each episode of SYNGAP1 Stories, Ashley will chat with SynGap 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 SynGap community.#841128MORE Host Ashley Frye
Producer/Network SYNGAP1 Podcasts by SRF
Email ****@curesyngap1.org
Facebook 6KInstagram 46.7K Avg Length 45 min Get Email Contact

27. 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 tumors, 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 analogs.MORE Producer/Network COR2ED Medical Education
Email ****@gmail.com
Avg Length 23 min Get Email Contact

28. 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
Apple Rating 5/5 Avg Length 22 min Get Email Contact

29. Rare Diseases Medical Conversation Video

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Join medical experts as they discuss their approaches to identifying, treating, and managing rare diseases, like primary biliary cholangitis, neuroendocrine tumors, 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 analogs.MORE Producer/Network COR2ED
Email ****@gmail.com
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30. 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. 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
Apple Rating 4.8/5Facebook 1.3MTwitter 105KInstagram 65.6K Avg Length 27 min Get Email Contact

31. 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
Apple Rating 5/5 Avg Length 37 min Get Email Contact

32. 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, a rare disease. By chatting to patients, health professionals, and advocates, we talk about all aspects of rare diseases including relationships, mental health, and much more. I cannot wait for you to hear some truly inspiring stories from some amazing people.MORE Host Katy Baker
Producer/Network Katy Baker
Email ****@gmail.com
Apple Rating 5/5 Avg Length 41 min Get Email Contact

33. 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.MORE Producer/Network Dr. Kee Chan and Dr. Amy Brower
Email ****@nbstrn.org
Apple Rating 4.7/5Facebook 810Twitter 584 Avg Length 43 min Get Email Contact

34. Rare Genomics / RareShare Podcast

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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.MORE Host Rare Genomics Institute, Inc.
Producer/Network Rare Genomics Institute
Email ****@raregenomics.org
Apple Rating 4/5 Avg Length 44 min Get Email Contact

35. 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
Producer/Network Christopher Velona
Email ****@projectsebastian.org
Apple Rating 4.2/5 Avg Length 29 min Get Email Contact

36. World of Promise

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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 diseases by interviewing doctors, scientists, patients, family members of people with rare or serious diseases, and or other experts in biotechnology. The show 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.MORE Producer/Network CSL Behring
Email ****@cslbehring.com
Apple Rating 5/5Facebook 560.5KTwitter 9.7K Avg Length 17 min Since Apr 2019 Get Email Contact

37. Rarebase Remarks

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Talking to stakeholders, scientists, patients about rare disease research.
Producer/Network Rarebase
Email ****@rarebase.com
Apple Rating 5/5Facebook 103Twitter 374Instagram 674 Avg Length 59 min Get Email Contact

38. 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
Twitter 11.8KInstagram 1.6K Avg Length 56 min Get Email Contact

39. 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
Apple Rating 5/5Instagram 586 Avg Length 52 min Get Email Contact

40. 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
Producer/Network Sandra Markus
Email ****@sandramarkus.biz
Facebook 155Twitter 13Instagram 24 Avg Length 40 min Get Email Contact

41. Rare Strides

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Rare STRIDES mission is to empower patients and medical teams with innovative tools to successfully fight rare diseases.
Producer/Network Rare STRIDES
Email ****@rarestrides.com
Facebook 780Twitter 47Instagram 859 Avg Length 31 min Get Email Contact

42. The New Horizon Talks

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Welcome to The New Horizon Talks, a podcast series by CSL Behring. Hosted by Science Writer and Broadcaster Vivienne Parry, it explores issues surrounding cell and gene therapies and their promise to change the lives of people living with rare and serious diseases. With a European focus, each episode features leading experts, scientists, healthcare professionals, patients, and patient representatives.MORE Host Vivienne Parry
Producer/Network CSL Behring
Avg Length 25 min Get Email Contact

43. Seeing the InviZable

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Hello! My name is Whitney Ward and I have a rare chronic illness. Let's face it. When you deal with something invisible and daunting on a daily basis, the world can be tough on us zebras. I've faced illness and all the unpleasantries it bestows and I've encountered the doubt and skepticism of a person who has never experienced disease. It is my hope I can be a bridge between these two worlds. So join me twice a month as I chat, educate, and break stigmas about chronic illness- Abled body people, always see the InviZable and Chronic Illness warriors, you are Able!MORE Host Whitney Ward
Avg Length 28 min Get Email Contact

44. 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.MORE Hosts Taylor, Liz
Producer/Network Taylor and Liz
Email ****@gmail.com
Apple Rating 4.9/5Facebook 193 Avg Length 28 min Get Email Contact

45. Don't Judge, Just Love

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Family Made Media presents 'Don't Judge, Just Love' with Shannon and Chase Willardson! A podcast where you can come as you are and find joy amidst the chaos of everyday life. Shannon is a lifestyle blogger and digital creator who's best known for educating the community as a special needs mom. She and Chase have a son and two daughters who both have an extremely rare genetic disease called Congenital Disorder of Glycosylation (specifically CDG-1p), a condition that currently has no treatment and affects only 15 people in the world.MORE Hosts Shannon Willardson, Chase Willardson
Producer/Network FamilyMade
Email ****@currentsmgmt.com
Apple Rating 4.9/5 Avg Length 29 min Get Email Contact

46. The Resilient Moms Podcast- Encouragement for Moms of Children with Rare Diseases & Special Needs, S

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In the Resilient Moms podcast, you will find a community for moms who will guide you in this beautiful journey of raising your warrior. You will feel encouraged, and supported, and you will not feel alone in this journey. I will provide actionable tips that will help you develop a new perspective and grow in your faith. My mission is to help you overcome fear and discover faith in this new journey.MORE Producer/Network April J.
Email ****@youareresilientmom.com
Apple Rating 5/5 Avg Length 19 min Get Email Contact

47. 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.MORE Producer/Network LDA Research
Email ****@ldaresearch.com
Apple Rating 5/5Facebook 725Twitter 47 Avg Length 34 min Get Email Contact

48. The Medical Maze

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Join host Don-Ellen Ray on a thrilling journey through 'The Medical Maze: Decoding Misunderstood Diseases.' Explore rare and misdiagnosed illnesses, uncovering hidden truths and empowering knowledge. From personal stories to expert insights, this podcast sheds light on the complexities of healthcare. Embark on an adventure of understanding, as we navigate the maze together. Get ready to unravel the mysteries and make a difference in the world of misunderstood diseases.MORE Host Don-Ellen Ray
Producer/Network Don-Ellen Ray
Email ****@gmail.com
Facebook 2.2KInstagram 3.1K Avg Length 40 min Get Email Contact

49. Signalise: a Dazzle4Rare Podcast

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The Dazzle4Rare event and Signalise podcast amplify the voices of rare diseases and associated communities by sharing their stories, news, 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
Facebook 991Twitter 1.4KInstagram 1.1K Avg Length 22 min Get Email Contact

50. Life Life Rare

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Are you facing trials? Are physical and mental challenges weighing you down on our journey? Through his experiences with the rare disease myasthenia gravis, host Stephen V. Smith shares encouragement and inspiration as he seeks to create a life of meaning and connection. 'Live Life Rare' is the companion podcast to the newsletter of the same name, which can be found at liveliferare.com. Join in the conversation as Stephen helps us discover and pursue what a rare life means to each of us.MORE Host Stephen V. Smith
Producer/Network Stephen V. Smith
Email ****@rarelifemedia.com
Avg Length 13 min Get Email Contact

51. off-book mindful

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A series where BIPOC, Disabled, and TGNC artist yannick-robin eike Mirko invites conversation on the causes closest to his heart, including the de-colonization of Puerto Rico, advocacy for rare diseases, and equality for TGNC people.MORE Host Yannick Robin Mirko
Email ****@gmail.com
Avg Length 6 min Get Email Contact

52. 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.
Avg Length 29 min Get Email Contact

53. 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
Producer/Network Kevin Alexander
Email ****@pkujournal.com
Avg Length 21 min Get Email Contact