Best 30 Rare Disease Podcasts

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

Rare Disease Advisor's Rare Care Podcast features exclusive interviews with experts and stakeholders from the rare disease community. more

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

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

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. 350 million people in the UK live with a rare disease so while each disease is individually rare, together rare diseases are common. 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

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

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

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

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

HAE Speaks, a podcast series on important Hereditary Angioedema (HAE) topics. Listen to patients, caregivers, and medical professionals discuss strategies to manage stress, prepare for a visit with your HAE specialist, care for a loved one with HAE, what to expect when you are newly diagnosed, the road to treatment, and much more. 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. more

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. more

Symptômes est un podcast santé dans lequel des médecins témoignent sur les patients et patientes qui les ont particulièrement marqués. Symptômes mystérieux, maladies rares, diagnostics compliqués, guérisons inespérées. more

A fortnightly podcast from the Journal of Inherited Metabolic Disease, where authors discuss recent publications from the journal. The podcast is intended for specialists and interested clinicians but is also intended to increase the accessibility of this work for patients and families. more

Curated by a fellow special needs mom in the trenches, The Rare Life features Madeline's own experiences and takeaways as she parents her son Kimball who was born with several major birth defects due to his extremely rare genetic disorder, as well as conversations with other parents who share their own advice and stories of loving a child with medical complexities. more

Living With Cystic Fibrosis podcast by Bonnell Foundation with the challenges and triumphs along the way.

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

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. more

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

Grey Genetics provides independent, professional genetic counseling services for individuals seeking to understand their genetic testing options, results, and healthcare implications for their families. Hosted by genetic counselor Eleanor Griffith, the show brings you the personal experiences of patients and genetic counselors. more