60 Best Rare Disease Podcasts

1. Rare with Flair

Play Video
Website Apple Spotify YouTube Episodes
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 listeners
Apple Rating 4.9/5Apple Reviews 95Facebook 490Twitter 434Instagram 1.2K Avg Length 60 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. P4A Let's Talk Rare: The Life Science Podcast

Play
Website Apple Spotify Episodes
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 For Access and our commitment to sustainable orphan drug access for patients with high unmet need, visit partners4access.comMORE Hosts Georgie Rack, Owen Bryant
Producer/Network Partners4Access
Email ****@partners4access.com
Estimated listeners
Apple Rating 4.5/5Apple Reviews 14Twitter 182Instagram 37 Avg Length 29 min Format Medium form Get Email Contact

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

Play
Website Apple Spotify YouTube Episodes
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 listeners
Apple Rating 5/5Apple Reviews 17Facebook 13.6KTwitter 8.1KInstagram 7.4K Avg Length 37 min Format Medium form Get Email Contact

4. Patient Empowerment Program: A Rare Disease Podcast

Play
Website Apple Spotify YouTube Episodes
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 listeners
Apple Rating 5/5Apple Reviews 34Facebook 1KTwitter 1.3KInstagram 1.7K Avg Length 37 min Format Medium form Get Email Contact

5. Few & Far Between: Conversations from the Front Lines of Drug Development

Play
Website Apple Spotify Episodes
Welcome to Few & Far Between! Chris O'Brien, CEO of Biorasi, is your host for Conversations from the Front Lines of Drug Development - from clinical research and policymakers to biotech innovators and industry leaders.MORE Host Chris OBrien
Producer/Network Chris O'Brien
Email ****@biorasi.com
Estimated listeners
Apple Rating 5/5Apple Reviews 12Facebook 369Twitter 536Instagram 767 Avg Length 46 min Format Long form Get Email Contact

6. Rare Disease Discussions

Play
Website Apple Spotify YouTube Episodes
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
Estimated listeners
Apple Rating 5/5Apple Reviews 3Facebook 9.1KTwitter 3K Avg Length 36 min Format Medium form Get Email Contact

7. RARECast

Play
Apple Spotify Episodes
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 listeners
Apple Rating 5/5Apple Reviews 12 Avg Length 35 min Format Medium form Get Email Contact

8. Rarely Heard

Play
Website Apple Spotify Episodes
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 listeners
Apple Reviews 9Twitter 12KInstagram 1.9K Avg Length 59 min Format Long form Get Email Contact

9. Hope Charities

Play
Website Apple Spotify YouTube Episodes
Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.
Producer/Network Jonathan James
Email ****@hope-charities.org
Estimated listeners
Apple Rating 4.8/5Apple Reviews 4Facebook 20.4KTwitter 1.9KInstagram 1.5K Avg Length 58 min Format Long form Get Email Contact

10. It Happened To Me: A Rare Disease and Medical Challenges Podcast

Play
Website Apple Spotify Episodes
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 own 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.We encourage you to learn more at ItHappenedToMePod.com...MORE Hosts Cathy Gildenhorn, Beth Glassman
Producer/Network Cathy Gildenhorn, Beth Glassman, and Kira Dineen (DNA Today)
Email ****@gmail.com
Estimated listeners
Apple Rating 4.9/5Apple Reviews 70 Avg Length 39 min Format Medium form Get Email Contact

11. A Rare Reality

Play
Website Spotify YouTube Episodes
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 listeners
Apple Rating 5/5Apple Reviews 7Facebook 3.9KTwitter 284Instagram 1.5K Avg Length 30 min Format Medium form Get Email Contact

12. Rare on Air

Play Video
Website Apple Spotify YouTube Episodes
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 listeners
Apple Reviews 8Facebook 44.3KTwitter 31.4KInstagram 9.1K Avg Length 13 min Format Short form Get Email Contact

13. The Pickle Jar Podcast - Adrenal Insufficiency

Play
Website Apple Spotify YouTube Episodes
WELCOME to THE PICKLE JAR PODCAST, connecting people living with ADRENAL INSUFFICIENCY around the world Join host Jill Battle, who was diagnosed with Addison's Disease in 2011 as she shares her journey and the stories of her guests. A powerful podcast validating the journeys of those living with adrenal insufficiency. Watch episodes on YouTube 'CHRONICALLY FIT CANADA'MORE Host Jill Battle
Producer/Network Jill Battle
Email ****@rogers.com
Estimated listeners
Apple Rating 5/5Apple Reviews 125 Avg Length 31 min Format Medium form Get Email Contact

14. SYNGAP1 Stories

Play Video
Website Apple Spotify YouTube Episodes
SYNGAP1-related disorders are rare genetic disorders that affect Rainy Schlosser's daughter Hope and Jo Ashline's son Andrew. As of July 1, 2025, there are only 1,636 people in the world diagnosed with SYNGAP1. 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 listeners
Apple Rating 5/5Apple Reviews 61Facebook 6.4KInstagram 44.6K Avg Length 45 min Format Long form Get Email Contact

15. Confessions of a Rare Disease Mama

Play
Website Apple Spotify Episodes
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
Estimated listeners
Apple Rating 5/5Apple Reviews 50Facebook 3.2K Avg Length 44 min Format Long form Get Email Contact

16. HippraConnects

Play
Website Apple Spotify YouTube Episodes
HippraConnects helps to facilitate community awareness and medical knowledge-sharing to give a voice to those helping patients with rare diseases and challenging medical conditions.
Producer/Network Hippra Podcast
Email ****@hippra.com
Estimated listeners
Apple Rating 5/5Apple Reviews 5 Avg Length 26 min Format Medium form Get Email Contact

17. Rare Care Podcast

Play
Website Apple Spotify Episodes
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 listeners
Apple Rating 5/5Apple Reviews 3 Avg Length 13 min Format Short form Get Email Contact

18. LEMS Aware

Play
Apple Spotify Episodes
*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 listeners
Apple Rating 5/5Apple Reviews 3 Avg Length 29 min Format Medium form Get Email Contact

19. Rare Research Report

Play
Website Apple Spotify Episodes
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 Email ****@cchmc.org
Estimated listeners
Avg Length 2 min Format Bite size Get Email Contact

20. Journeys through pulmonary fibrosis

Play
Website Apple Spotify YouTube Episodes
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 listeners
Apple Rating 4.8/5Apple Reviews 8Facebook 1.3MTwitter 105KInstagram 77.8K Avg Length 27 min Format Medium form Get Email Contact

21. The Rare Disease Podcast

Play
Website Apple Spotify Episodes
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 listeners
Apple Rating 1/5Apple Reviews 11Facebook 1.7KTwitter 5.2KInstagram 3.2K Avg Length 49 min Format Long form Get Email Contact

22. Demystifying NMO & MOG

Play Video
Website Apple Spotify YouTube Episodes
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 listeners
Apple Rating 5/5Apple Reviews 24 Avg Length 37 min Format Medium form Get Email Contact

23. My rare disease

Play
Website Apple Spotify Episodes
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 listeners
Apple Rating 5/5Apple Reviews 4 Avg Length 41 min Format Long form Get Email Contact

24. Living With PSC

Play
Website Apple Spotify YouTube Episodes
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 Email ****@pscpartners.org
Estimated listeners
Apple Rating 5/5Apple Reviews 27Facebook 4.5KTwitter 2.5K Avg Length 31 min Format Medium form Get Email Contact

25. Newborn Screening SPOTlight Podcast

Play
Website Apple Spotify YouTube Episodes
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
Producer/Network Dr. Amy Brower
Email ****@acmg.net
Estimated listeners
Apple Rating 4.7/5Apple Reviews 9Facebook 808Twitter 584 Avg Length 43 min Format Long form Get Email Contact

26. The Rare hour with Christopher Velona

Play
Website Apple Spotify Episodes
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
Estimated listeners
Apple Rating 4.2/5Apple Reviews 5 Avg Length 29 min Format Medium form Get Email Contact

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

Play
Website Apple Spotify Episodes
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 listeners
Apple Rating 4/5Apple Reviews 2 Avg Length 42 min Format Long form Get Email Contact

28. Rarebase Remarks

Play
Website Apple Spotify Episodes
Talking to stakeholders, scientists, patients about rare disease research.
Producer/Network Rarebase
Email ****@rarebase.com
Estimated listeners
Apple Rating 5/5Apple Reviews 1Facebook 107Twitter 374Instagram 674 Avg Length 59 min Format Long form Get Email Contact

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

Play
Website Apple Spotify YouTube Episodes
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
Estimated listeners
Apple Rating 5/5Apple Reviews 1Facebook 2.3KTwitter 796Instagram 1.5K Avg Length 56 min Format Long form Get Email Contact

30. Insightful Moments: My VIBE

Play
Website Apple Spotify Episodes
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 listeners
Apple Rating 5/5Apple Reviews 20Facebook 7KTwitter 2.4KInstagram 4.4K Avg Length 50 min Format Long form Get Email Contact

31. Into the Skid Podcast

Play
Website Apple Spotify YouTube Episodes
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 listeners
Apple Rating 5/5Apple Reviews 6Instagram 569 Avg Length 52 min Format Long form Get Email Contact

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

Play
Website Apple Spotify Episodes
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 listeners
Apple Rating 5/5Apple Reviews 3Twitter 2.6K Avg Length 36 min Format Medium form Get Email Contact

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

Play
Website Apple Spotify Episodes
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 listeners
Apple Rating 4.9/5Apple Reviews 14 Avg Length 41 min Format Long form Get Email Contact

34. I Care for Rare

Play
Website Apple Spotify Episodes
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
Estimated listeners
Facebook 169Twitter 13Instagram 299 Avg Length 39 min Format Medium form Get Email Contact

35. IFOPA Podcast Series

Play
Website Apple Spotify YouTube Episodes
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
Estimated listeners
Facebook 5.2KTwitter 810Instagram 1.6K Avg Length 38 min Format Medium form Get Email Contact

36. Rare Strides

Play
Website Apple Spotify YouTube Episodes
Rare STRIDES® mission is to empower patients and medical teams with innovative tools to successfully fight rare diseases. #makerarevisible
Producer/Network Rare STRIDES
Email ****@rarestrides.com
Estimated listeners
Facebook 766Twitter 46Instagram 854 Avg Length 31 min Format Medium form Get Email Contact

37. Being Rare Podcast

Play Video
Website Apple Spotify YouTube Episodes
Hosted by rare disease advocate Sarita Edwards, Being Rare is a talk radio style podcast that explores the issues shaping the rare disease and health equity landscape. Each episode dives into real conversations at the intersection of policy, practice, and patient experience. Through bold, unscripted discussions with thought leaders, clinicians, advocates, and changemakers, we'll talk about health equity, access to care, innovation, policy, community, and collaboration. Follow us on social media @beingrarepodcast. Got questions about the show? Email us - ****@theewefoundation.org!MORE Host Sarita Edwards
Producer/Network Sarita Edwards
Email ****@theewefoundation.org
Estimated listeners
Facebook 246Twitter 270Instagram 741 Avg Length 28 min Format Medium form Get Email Contact

38. FIECON Patient Perspectives

Play Video
Website Apple Spotify YouTube Episodes
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, with the aim of gaining 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
Estimated listeners
Apple Rating 5/5Apple Reviews 6Twitter 52Instagram 96 Avg Length 30 min Format Medium form Get Email Contact

39. Living Ultra Rare: The ABL+ Podcast

Play
Website Apple Spotify YouTube Episodes
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
Estimated listeners
Avg Length 29 min Format Medium form Get Email Contact

40. The New Horizon Talks

Play
Website Apple Spotify Episodes
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.Join the conversation on social media using #NewHorizonTalks.MORE Host Vivienne Parry
Producer/Network CSL Behring
Estimated listeners
Avg Length 25 min Format Medium form Get Email Contact

41. Seeing the InviZable

Play
Website Episodes
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
Estimated listeners
Avg Length 28 min Format Medium form Get Email Contact

42. Not So Rare Podcast

Play
Website Apple Spotify Episodes
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 listeners
Apple Rating 4.9/5Apple Reviews 16Facebook 193Instagram 183 Avg Length 28 min Format Medium form Get Email Contact

43. Don't Judge, Just Love

Play
Website Apple Spotify YouTube Episodes
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
Email ****@currentsmgmt.com
Estimated listeners
Apple Rating 4.9/5Apple Reviews 147 Avg Length 29 min Format Medium form Get Email Contact

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

Play
Website Spotify Episodes
Are you raising a child with a Rare Disease, Special Need, or an Invisible Disease? Are you frustrated because you don't have help and people just don't understand your life? Do you feel like doctor's appointments, daily medicine, and hospital bills are consuming your life? Do you want to have hope and live in freedom and not fear of what's to come?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, 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...MORE Producer/Network April J.
Email ****@youareresilientmom.com
Estimated listeners
Apple Rating 5/5Apple Reviews 2 Avg Length 19 min Format Short form Get Email Contact

45. Rare Together

Play
Website Apple Spotify YouTube Episodes
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 listeners
Apple Rating 5/5Apple Reviews 8Facebook 847Twitter 42 Avg Length 34 min Format Medium form Get Email Contact

46. The Medical Maze: Decoding Misunderstood Diseases

Play
Website Apple Spotify YouTube Episodes
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
Estimated listeners
Apple Rating 3.7/5Apple Reviews 6Facebook 2.1KInstagram 3K Avg Length 40 min Format Long form Get Email Contact

47. COR2ED - Rare Diseases Medical Conversation

Play Video
Website Apple Spotify YouTube Episodes
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
Estimated listeners
Avg Length 23 min Format Medium form Get Email Contact

48. Signalise: a Dazzle4Rare Podcast

Play
Website Apple Spotify Episodes
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 listeners
Apple Reviews 2Facebook 968Twitter 1.4KInstagram 1.1K Avg Length 22 min Format Medium form Get Email Contact

49. Life Life Rare

Play
Website Apple Spotify Episodes
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
Estimated listeners
Avg Length 13 min Format Short form Get Email Contact

50. Never Give Up: A Rare Disease Podcast

Play
Website Spotify Episodes
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
Estimated listeners
Avg Length 21 min Format Medium form Get Email Contact

51. COR2ED - Rare Diseases Medical Conversation Video

Video
Website Apple YouTube
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 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
Email ****@gmail.com
Estimated listeners
Get Email Contact