Best 60 Rare Disease Podcasts

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

'Heart to Heart with Anna' is the longest-running podcast devoted to the congenital heart defect (CHD) community. Our shows feature Survivors, family members, medical professionals and others in the CHD community who wish to share their stories, expertise, and advice. This show is devoted to empowering, educating and enriching the lives of members of the CHD community. 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

I quit my law job to be at home with my kids. Turns out our daughter Tess has a rare genetic disorder called USP7. She's different. And now, so is everything else. #USP7 #autism more

Discover New Advances in the world of genetics, from technology like CRISPR to rare diseases to new research. For over a decade, 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 2020, 2021, and 2022 Science and Medicine Podcast Award Winner***Learn more (and stream all 250 episodes) at DNAtoday.com. You can contact the show at info@DNAtoday.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

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

Welcome to the Hope and Help for Fatigue and Chronic Illness Podcast. It's our mission to help people that have some really complicated illnesses. People that have post viral syndrome like long COVID and ME/CFS or chronic fatigue. Those that have had toxic exposures like gulf war illness, mold exposures, pesticides and heavy metals. These illnesses can present very similarly, they can actually look the same to your clinician.You may have fatigue, post exertional malaise, foggy brain and many other symptoms that seem to be common across many illnesses. Underneath all of these illnesses, the causes of the symptoms are very similar. We know first hand how hard it is to get access to meaningful information and care when you find yourself or a loved one here. It is our hope to give you, bit by bit, the knowledge and ideas that we have seen make a positive impact on individuals just like you. And that you will take all those threads and begin to weave back together a healthier person.Brought to you by the Institute for Neuro-Immune Medicine where we have over 200 years of combined clinical experience in Neuro-Inflammatory disease. 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

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

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

Susan Hendrix is a lupus survivor who has achieved a great deal while dealing with this chronic illness. She will take you through her lows and highs, but most importantly she will bring further awareness to this chronic illness and allow others to know you can still live your life to the fullest. Susan Hendrix is educated in the field of Health and Science, at the age of 29 she became an entrepreneur and established her own Durable Medical Equipment Company along with a Medical Consulting Firm. more

Talk Fragile X Podcast consists of a group of Mom's of FX Children, Self-Advocates, and Full-Mutation carriers from the Northwest Region! We're all on a mission to use this podcast platform to reach as many FX families as possible, create more awareness of FX, and provide helpful resources and support. Even if you don't know what Fragile X Syndrome is, this Podcast is still for you! We want everyone to know what Fragile X is and understand its genetic prevalence in individuals lives. more

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

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

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

This podcast is a service of the Immune Deficiency Foundation, or IDF, 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 miniseries on The IDF Podcast that explores the harsh realities of health equity in the United States. Hosted by Dr. Nicole Rochester.'Undiagnosed' is a narrative docuseries on The IDF Podcast that tells the true stories of PI patients and their long journeys to proper diagnosis and treatment. 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

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

Fighting sarcoidosis as well as other rare diseases.

Being diagnosed with an uncommon cancer like a neuroendocrine tumor (NET) can feel isolating or overwhelming. Listen in as the NET Research Foundation (NETRF) speaks with experts and patients who will help us to understand NET diagnosis, treatment, and everything in between. NETWise is for everyone, from newly diagnosed patients to longtime survivors as well as caregivers and family members. This is your guide to learning, listening, knowing, and being NETWise. more

The Major Pain podcast is a collection of interviews from people living with chronic illness and disability. Our goal is to spread awareness, empathy, and community around experiences often lived through in isolation. Through sharing these stories important themes have become increasingly apparent, including the dangers of medical gaslighting, the importance of self-advocacy, and the fact that none of us are in this alone. more

  RARE à l'écoute est un podcast dédié aux maladies rares

The Foundation Fighting Blindness is committed to finding treatments and cures for blinding retinal diseases that affect more than 10 million people in the United States. To learn more, go to FightingBlindness.org. 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. 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

Lupus LA enters the fastest growing media market with the new Your Story Our Fight® podcast which will give a voice to lupus patients while continuing Lupus LA's mission to raise lupus awareness worldwide. Hosted by the Chairman of Lupus LA and lupus patient himself, Adam Selkowitz, patients from all walks of life will share stories about their unique lupus journeys. With a focus on inspiration and hope, Lupus LA's podcast will provide support and optimism to a patient community looking for assurance that they are not alone. 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

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

PeerView (PVI) is a leading provider of high-quality, innovative continuing education for clinicians and their interprofessional teams. Combining evidence-based medicine and instructional expertise, PeerView activities improve the knowledge, skills, and strategies that support clinical performance and patient outcomes. PeerView makes its educational programming and expert-led presentations and symposia available through its network of popular podcast channels to support specific specialties and conditions. more

A podcast for mothers of children with rare diseases to find support, advice, community, and hope! Join Rare Mamas founder and podcast host, Nikki McIntosh as she talks with remarkable rare moms rising from difficult diagnoses for their children. Catch an episode of Rare Mamas Rising and walk away encouraged, uplifted, and empowered! more

Welcome to Help 4 HD Live! We are proud to broadcast credible information and education to the Huntington's disease community on a weekly basis. Help 4 HD Live! broadcasts every week providing vital information and inspiration to our Huntington's community. We have been blessed to interview many of our JHD/HD researchers, medical professionals, care providers and the pharmaceutical industry for six years. Join our Hosts, Katie Jackson each week for incredible programming and don't forget to share this channel with your colleagues, family and friends. **Help 4 HD Live! is made possible through an education grant from Teva Pharmaceuticals and the Griffin Foundation. Thanks for tuning in! Help 4 HD International Inc. **Please consult with you own physician for advice about any medical recommendation. more

News and clinical perspective including CME programs focused on rare diseases. CheckRare focuses on rare and neglected diseases. more

Retina UK supports people affected by inherited progressive sight loss and invests in medical research to ensure that people an lead a fulfilling life, now and in the future. 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

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. 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. more

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.#841128 more

Explore the untold stories of females impacted by X-linked conditions. Hosted by Emma Bliss and Taylor Kane of Remember The Girls, 'collectively coeXisting' brings to light the reality of being a female impacted by an X-linked condition and the general challenges women face within the healthcare system.Hear from X-linked carriers and affected females about their journeys with genetic testing, family planning, physical symptoms, mental health, and everything in between. Also learn from experts about topics such as carrier screening, genetic counseling, advancements in research, and more. more

Real life experiences, practical advice and everything in between. Whether you are diagnosed with Neuroendocrine Cancer or another rare or less common cancer, our podcast series cover topics from initial diagnosis, treatments and follow up, looking after your mental health and the professional perspectives from those involved in your care. Hosted by Catherine Bouvier and produced by Neuroendocrine Cancer UK. We hope this series answers some of your questions or provides a source of support - or both, after all, this is not just NE cancer. more

CancerCare's free Connect Education Workshops are a way for people to learn about cancer-related issues from the convenience of their home or office. Leading experts in oncology provide the most up-to-date information in these workshops to help you and your loved ones better understand and cope with your cancer diagnosis, treatment options, quality-of-life concerns, treatment side effects, pain management, doctor-patient communication and other important topics. more

CancerCare's free Connect Education Workshops are a way for people to learn about cancer-related issues from the convenience of their home or office. Leading experts in oncology provide the most up-to-date information in these workshops to help you and your loved ones better understand and cope with your cancer diagnosis, treatment options, quality-of-life concerns, treatment side effects, pain management, doctor-patient communication and other important topics. more

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

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

Lupus Science and Medicine is a global, peer reviewed, Open Access, online journal that provides a central point for publication of basic, clinical, translational, and epidemiological studies of all aspects of lupus. It is the first lupus-specific Open Access journal in the world and was developed in response to the need for a barrier-free forum for publication of groundbreaking studies in lupus. more

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

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. Support this podcast: https://podcasters.spotify.com/pod/show/histio/support 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

Visibiliser l'invisible au travers de témoignages uniques et singuliers c'est la vocation première du podcast Les invisibles ! Maladies invisibles, maux et expériences invisibilisés... Pour des raisons individuelles, les corps, les esprits et les sociétés invisibilisent des expériences vécues. Dans ce podcast, crée par Tamara Pellegrini, la tengeante s'inverse. La parole est donnée aux personnes qui vivent avec ce qui ne se voit pas.  Diffuser ces espaces de paroles c'est : sensibiliser aux vécus invisibilisés  permettre de se reconnaitre et s'identifier aux histoires des autres créer des groupes d'échanges et de soutien sensibiliser l'entourage (familial, amical, médical) offrir des outils pour une meilleure qualité de vie Tamara Pellegrini, créatrice de ce podcast, vit avec une maladie neurologique invisible. Elle est l'auteure du livre 'Ma maman vit avec une maladie invisible, mais moi je la vois !' qui aborde la maladie d'un parent avec simplicité et poésie aux enfants dès 3 ans. Retrouvez nous sur Instagram : @les_invisibles_podcast pour recevoir toutes les info en avant première et échanger avec la communauté ! Bonne écoute !  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

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

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. more

We explore the health and wellness concerns of people on the hypermobility spectrum from diagnosis to management, asking those on the forefront of research and treatment how to help all of us on the hypermobility and connective tissue disorder spectrum including the Ehlers-Danlos Syndromes. more

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

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

Radio Rare is a podcast where we share the stories of those in and around the rare and less common cancer community. Being diagnosed with a rare cancer doesn't mean you're alone. Radio Rare will dive into the human stories of the rare cancer experience, the innovation and the advocacy.Addressing the feeling of isolation experienced by so many, we look to create a close community of those affected by rare and less common cancers.Produced by Rare Cancers Australia more

ABCs of NMOSD brings together the latest information and research about all things NMOSD, from diagnosis and treatment to quality of life and what it's like to live with NMOSD. We invite medical experts and researchers, to share the latest up-to-date research and clinical knowledge. We have conversations with individuals who have been diagnosed with NMOSD, their caregivers, and allied health professionals. We give tips on how to advocate at school and at work, where to find help and support, navigate health insurance, and work with a team of medical experts. more

Everyone's experience with cystic fibrosis (CF) is unique. Listen along as different individuals in the community share their diverse perspectives on how CF impacts day-to-day life, and get useful information to help empower you in your own journey. more

PeerVoice is an independent, professional medical publishing concern focused on gathering and reporting information pertaining to clinically relevant advances and developments in the science and practice of medicine. As publishers of PeerVoice Publications, PeerVoice is solely responsible for the selection of publication topics, the preparation of editorial content and the distribution of all materials it publishes. more

The Positive Twist is a podcast about the third most common movement disorder, dystonia. In every episode we meet patients, caregivers and experts, sharing facts, and their stories related to dystonia, each ending with a positive twist! more

PeerVoice is an independent, professional medical publishing concern focused on gathering and reporting information pertaining to clinically relevant advances and developments in the science and practice of medicine. As publishers of PeerVoice Publications, PeerVoice is solely responsible for the selection of publication topics, the preparation of editorial content and the distribution of all materials it publishes. more