39 Best Rare Disease Podcasts to Listen to (2026)

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. These are the stories of children who have been told that they cannot, and that have proved the world wrong. more

This is the real, raw, and all the feels of loving a child with disabilities. Episodes feature parent-guests, professionals, and solo episodes with host Madeline Cheney. Their authentic conversations don't shy away from the strong and mixed emotions that often accompany medically-complex parenting.Parents listen in to feel seen, validated, and receive much-needed solidarity. Professionals working with disabled people listen in to better understand what is often going on under the surface for a family living with disabilities. more

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.com more

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). Their RAAM journey is the subject of an award winning documentary called The Ataxian. Kyle rode his trike to the top of the highest paved road in North America and Sean ran with the Olympic Torch.Join us, subscribe, and tell a friend! more

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 . This show is part of 'Gene Pool Media: The Science Podcast Network' head to GenePoolMedia.com to explore all our science themed shows. more

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 #autism more

The goal of my podcast is to have a central place for people afflicted with Scleroderma and a place for their families and friends to be informed by specialists in either Scleroderma or autoimmune topics. I will cover a wide range of topics like nutrition, medications, vitamins, and lifestyles. I will also showcase stories from others affected by Scleroderma and how they have dealt with the disease. For additional information you can visit my website-Mogilsmobcast.com, or follow me on Instagram-mogilsmob and Facebook mogilsmob more

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. more

Fighting sarcoidosis as well as other rare diseases.

NETWise, a podcast about neuroendocrine cancer, is here to help patients and caregivers navigate the world of NETs. more

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

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. Please use the contact form on our website to submit your guest suggestions, comments, questions, ideas, and feedback for the show, you can also email us directly at ****@gmail.com. It Happened To Me is created and hosted by Cathy Gildenhorn and Beth Glassman. Steve Holsonback is our media engineer and co-producer. DNA Today's Kira Dineen is our ... more

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

This podcast is a service of the Immune Deficiency Foundation — a nonprofit organization dedicated to improving the diagnosis, treatment, and quality of life of people diagnosed with primary immunodeficiency, or PI. 'Bold Conversations' is a program that explores the harsh realities of health access in the United States. Hosted by Dr. Nicole Rochester. 'Undiagnosed' is a narrative docuseries on that tells the true stories of PI patients and their long journeys to proper diagnosis and treatment. To learn more about primary immunodeficiency, the PI community, or to support the foundation as a donor or volunteer, please visit our website at www.primaryimmune.org. If you have any questions you would like to be answered, email us at ****@primaryimmune.org. more

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

The Foundation Fighting Blindness is the driving force in the global development of treatments and cures for blinding diseases. To learn more, go to FightingBlindness.org. more

Living with cystic fibrosis: the challenges and triumphs along the way. Live-Breathe-Inspire

Glioblastoma aka GBM is a podcast by the Glioblastoma Research Organization that highlights the stories of our community, from Glioblastoma Warriors, to caregivers, medical advisors, and more. Glioblastoma aka GBM is hosted by Amber Barbach, who founded the Glioblastoma Research Organization in 2018, after her father was diagnosed with and passed away from Glioblastoma.This podcast is an exploration of stories and personal experiences, and is not meant to be taken as medical advice of any kind. If you have questions, always consult with your own medical providers and healthcare team. You are warmly invited to connect with the team at the Glioblastoma Research Organization, and share your own stories and experiences. For more information, please visit gbmresearch.org.  more

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. Learn more about PH at www.phaware.global more

Hi! We're Luna and Shelli, also known as The Two Bendy Mommas. We talk about the lived experience of those affected by the inherited connective tissue disorders, and its intersection with neurodiversity, elevating marginalized and intersectional voices for our community. Please note: Hacking Hypermobility is produced in its entirety by three disabled women in various stages of life and parenting adventures. New episodes are typically released biweekly from January through July. more

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. more

Welcome to Few & Far Between! Melissa Alesse, President of Biorasi, is your host for fascinating conversations - from clinical research and policymakers to biotech innovators and industry leaders. more

JIMD Podcasts is home to the Journal of Inherited Metabolic Disease podcast and the JIMD Shortcast. We're also proud to showcase Metabolic Mysteries and the new Footprints in IMD podcast. more

Talk Fragile X Podcast exists to provide a platform for families and Fragile X experts to share their knowledge, resources, and experiences, all in the hopes of creating more awareness, advocacy, and support of Fragile X Syndrome! Even if you don't know what Fragile X Syndrome is, this Podcast is for you! I want everyone to know what Fragile X is and understand it's genetic prevalence in individuals lives. more

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.com more

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 them more

The #BeyondHAE Podcast is a series dedicated to amplifying the voices of young people affected by Hereditary Angioedema and raising awareness about the disease. Hear from a different host each episode as they share stories of perseverance, activism, and support. We hope that you find strength in listening to stories from HAEA community members. Everyone has a story and this podcast series is just that, an opportunity for young people affected by HAE to share their unique stories with you! Visit www.haea.org for Hereditary Angioedema support, information and resources. more

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

A podcast telling the stories of those affected by a fatal muscle wasting disease, Duchenne muscular dystrophy (DMD), that robs children of their ability to walk by the age of 11, the ability to raise their arms by their teenage years, and eventually their lives in their early 20s. Hosted by 23 year old founder of the 501 (c)3 nonprofit organization Destroy Duchenne, Elijah Stacy, who also suffers from Duchenne muscular dystrophy. The goal of the Destroy Duchenne podcast is very simple, yet ambitious: interview every person that has a relationship to Duchenne. more

The Invisible Cancer Podcast raises awareness of neuroendocrine cancer, a cancer most people have never heard of, and this lack of awareness can affect diagnosis, treatment, and care. Through real-life stories, expert insights, and practical advice, we explore the challenges patients face, from initial diagnosis to management, including the impact on mental health and ongoing follow-up. Hosted by Lisa Walker and produced by Neuroendocrine Cancer UK, this podcast shines a light on neuroendocrine and other often-overlooked cancers, offering information, support, and connection to anyone affected. more

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

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

Each week, MIB Agents talks with the leaders and innovators in osteosarcoma surgery, research, treatment and advocacy. Questions are taken during the webinar and are included in each podcast. More information is available at www.mibagents.org more

Daily, digital coverage of the latest SMA news and perspectives.

NCAN has produced conferences for NET patients for over 15 years - conferences that help keep you up to date on issues impacting your care like new diagnostics and treatments. Now you can tune in to a monthly podcast featuring interesting insights and stories from thought leaders and personalities in the neuroendocrine cancer community! more

CReATe Connect podcasts are short recorded interviews on topics we hope will be of interest to patients with ALS and other motor neuron diseases. more

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

The Beyond the Diagnosis podcast was created by the Histiocytosis Association to give patients, families, caregivers and other members of the Histio Community the opportunity to have access to another educational resource to help them on their histio journey. The podcast provides an additional platform by which listeners can consume information while on the go or if unable to remain in front of a computer for an extended period of time. more

Discussion of recent publications from the research literature on Alexander Disease, hosted by Albee Messing from the University of Wisconsin-Madison. more