AWOL Zebra 

“I have hEDS. If I don’t talk with someone I think I’ll go crazy! The answer? I share my daily life as a sort of medication. AWOL Zebra aims to educate, share and have fun. Learn how to fight this invisible illness with me, CHristie Lynn Hanchey. Restoring my body back to health. Sharing my ups downs and in-betweens. You’re not alone. Join me and let’s learn together. AWOL Zebra is not authorized, endorsed, or sponsored by anyone. It’s a no holds barred discussion about Fascia, hEDS and plenty of other stuff.”

Listen to AWOL Zebra: HERE

Bendy Bodies

“Are you affectionately known as ‘Gumby’ among your friends and family? Being ‘double-jointed’ isn’t just a quirky trait—it can lead to a host of problems throughout the body, even if you were once ‘bendy’ but aren’t anymore. Connective tissue disorders, like Ehlers-Danlos Syndromes (EDS), often go unrecognized by doctors, causing life-altering symptoms such as pain, frequent injuries, joints ‘giving way,’ fatigue, gastrointestinal issues, and insomnia.

Welcome to the Bendy Bodies podcast, hosted by EDS expert, Dr. Linda Bluestein, MD. Join us as we delve into topics relevant to anyone experiencing symptomatic joint hypermobility. From insightful discussions with specialists boasting diverse expertise to practical tips for optimizing your hypermobile health, we’re here to empower you on your journey to wellness.”

Listen to the Bendy Bodies Podcast: HERE

Chiari Champion

“Are you someone, or have a loved one, with Chiari malformation, Syringomyelia, Ehlers-Danlos syndrome, or a related disorder? Searching for a community that will raise some questions, find some answers, and share some humor and personal experiences in a fun and engaging forum? Welcome to The Chiari Champion. I’m Noah Forman, and this podcast’s purpose is to raise awareness, seek solutions, and share our stories so that we can grow, heal, and bond – to live life to its fullest and find strength in our purpose. So join me on this journey, where I’ll be joined by special guests, medical experts, innovative thinkers, and prominent voices in the field. The Chiari Champion…let’s start conquering each week…together. Follow us now on Apple Podcasts, Spotify, or whenever you enjoy your podcasts.”

Listen to the Chiari Champion Podcast: HERE

Fantastic Pains and How We Hide Them

“Join on us on our individual journeys living, coping, and laughing at our lives with Ehlers-Danlos Syndrome or EDS. We intend to raise awareness about invisible Illnesses, commiserate with fellow chronic disease friends, and share our own coping strategies and advice we have accumulated on our respective journeys.”

Listen to the Fantastic Pains Podcast: HERE

Finding Your Range

“Welcome to Finding Your Range, the Podcast which uncovers the truth behind living with hypermobility, Ehlers-Danlos Syndrome and chronic pain. Your host is Jeannie Di Bon, a movement therapist who specialises in working with clients with these conditions. She is also the author of two books – Pilates Without Tears and Hypermobility Without Tears. She is an educator of teachers and therapists in the field of movement for hypermobile patients and speaks regularly for The EDS Society and the HMSA. Jeannie also has hypermobile EDS and was a chronic pain sufferer herself. Her passion is to help others move pain-free. This Podcast features expert guests and patient stories. We hope you enjoy this Podcast. Thank you for listening.”

Listen to Finding Your Range: HERE

Hypermobility Happy Hour

“Meet host Kerry, an attorney passionate about spreading awareness about hypermobility conditions including hypermobile Ehlers-Danlos Syndrome. Guests on the Hypermobility Happy Hour have included world renowned physicians in the field of hypermobility conditions, advocacy experts, individuals living with hypermobility conditions, and a United States ambassador. Listen in as we examine a wide range of topics, including treatment options for hypermobility conditions and ways to improve the doctor-patient relationship.”

Listen to the Hypermobility Happy Hour: HERE

Hacking Hypermobility

“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.”

Listen to Hacking Hypermobility: HERE

Occult Awareness

“”Occult Awareness” is a transformative podcast dedicated to shining a light on the often misunderstood realm of hidden or ‘occult’ medical conditions. The podcast serves as a beacon of hope and knowledge for individuals navigating the complexities of rare and difficult-to-diagnose conditions, such as Occult Tethered Cord and Cervical Cranial Instability (CCI) within the Ehlers-Danlos Syndrome (EDS) population. Each episode invites listeners into the lives of those who face the daily challenges of seeking accurate diagnoses, battling misperceptions, and often receiving inadequate treatment.The heart of “Occult Awareness” lies in its compelling storytelling, as guests share their personal journeys, from the trials of living with undiagnosed symptoms to the triumphs of finding understanding and proper care. Alongside these powerful narratives, the podcast brings expert voices from the medical community to discuss the subtleties of occult conditions, current research, and emerging treatments.By fostering a community of empathy and advocacy, “Occult Awareness” empowers those affected by these conditions and educates the broader public, healthcare providers, and policymakers about the critical need for awareness and the nuances of medical care for occult disabilities. Each episode aims to educate, inspire, and advocate for change, contributing to a more informed and compassionate society.”

Listen to Occult Awareness Podcast: HERE

NordPod

“Join us for inspiring stories and news about what is being done to help people with rare diseases live their fullest and best lives. Find out what is happening on the frontlines of care, advocacy, research, and science.”

Listen to NordPod: HERE

Once Upon A Gene

“Once Upon a Gene is a podcast that explores the world of raising children with disabilities and rare genetic disorders. Host, Effie Parks shares her own personal story of raising a child with CTNNB1 syndrome, while trying to find the non-existent rule book of bringing up such a special kid. This podcast features interviews with fellow parents, therapists, doctors and anyone else who wants to share their story.”

Listen to Once Upon A Gene: HERE

RareCast

“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.”

Listen to Rare Cast: HERE

Rare Together Podcast

“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. Available on YouTube, Spotify, Apple Podcasts, and through the Rare Disease Network Facebook group, 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. Bringing them together by what makes them unique – being rare together.”

Listen to the Rare Together Podcast: HERE

Wait, How Do You Spell That?

“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 laugh and learn about issues that impact people living with diseases our doctors can’t to spell.”

Listen to Wait, How Do You Spell That?: HERE