April 23, 2021

12 Podcasts Highlighting Voices From the Rare Disease Community

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Whether you’re already a podcast lover or are just starting to explore the podcast universe, you're in luck: There are a good number of podcasts that highlight voices from the rare disease community! We’ve rounded up some of the rare disease podcasts we love that are going strong and putting out new and upcoming episodes. Here are some reliable — and educational — podcasts from and for the rare disease community:

1. Once Upon a Gene by Effie Parks

Effie, a parent of a child with a rare disease, shares her family’s experience, interviews with experts and moving stories from other rare disease families who have persevered, cried, bonded and grown. These are stories of children who have been told that they cannot–and that have proved the world wrong.

2. Because We are Strong by Theresa Thomas and Kristine Hoestermann

Rare best friends Theresa and Kristine invite guests in the rare disease community to share their stories and help bridge the gap between a lack of knowledge and understanding.

3. Two Disabled Dudes by Kyle Bryant and Sean Baumstark

Co-hosts Kyle and Sean are both affected by a rare disease called Friedreich’s ataxia (FA), a neurodegenerative movement disorder. They interview rare disease leaders, paralympic athletes, health professionals, authors, speakers and more, to discuss living life beyond circumstances.

4. NORDpod by the National Organization for Rare Disorders

Hear from experts from inside and outside the NORD organization and find primers on topics like telehealth and gene therapy.

5. See the Invisible: Living with an Invisible or Rare Disease by Ronda F Jefferson

The host of this podcast seeks to share information about living with and dealing with a chronic or invisible disease, made even more difficult when the disease is rare. She shares her story and also invites guests to share their viewpoints and experiences, with the goal of helping patients, families, and other support systems better communicate and empathize with each other.

6. RAREcast by Global Genes

This podcast focuses on the intersection of rare disease with business, science and policy. Recent topics include the economic toll of rare disease and CRISPR.

7. The Rare Life by Madeline Cheney

Madeline has a son with a rare disease, and uses this podcast as a space to discuss parenting a child with a rare condition. Episodes consist of her sharing her expertise with special needs parenting, interviewing parents of children with complex, rare medical conditions, and speaking with professionals.

8. R is for Rare by Annie Watson

Annie Watson is a young adult who has lived with narcolepsy, a rare sleep disorder, for almost her entire life. Curious about other rare diseases, Annie will interview someone who has been affected (either directly or indirectly) by these diseases and disabilities. She will be discussing the ins and outs of some of the most captivating rare diseases with the patients, doctors, and loved ones who know what it’s like to be rare.

9. Wait, How Do You Spell That? by Patient Worthy

This podcast talks about issues affecting people living with rare and underdiagnosed conditions, with discussions with advocates across the community. The podcast exists to chat and laugh and learn about issues that impact living with diseases doctors can’t even spell.

10. Rare with Flair by Casey Greer & Cassandra Mendez

Casey and 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!

11. Go Shout Love by Go Shout Love Foundation

Go Shout Love tells the stories of amazing kids on rare medical journeys through interviews with their families.These conversations are designed to inspire and encourage anyone who listens.

12. My Rare Disease by Katy Baker

On this podcast, the host, who was diagnosed with a rare disease as an infant, chats with other rare disease patients, health professionals, and advocates to talk about all aspects of rare disease. They discuss relationships, mental health, and much more.

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