For people affected by rare diseases, finding and connecting to a community can be incredibly empowering. And storytelling is one of the best ways to forge connections to other people and other points of view – hearing someone’s story, identifying with their struggles, celebrating their victories and walking a mile, or an hour, in their shoes. Storytelling can help break through isolation and connect people who may not live near another person with the same diagnosis.
And the ever-more-popular podcast is one of the best media for storytelling, particularly for the rare disease community. Podcasts can be downloaded and listened to during a busy parent’s schedule, or while a rare disease patient travels to or waits for a medical procedure. It’s an accessible, flexible and consistent way to tell stories and connect to the rare disease community.
We’ve highlighted five podcasts from the rare disease community that inspire, inform, empower and create connection.
Matthew Zachary, a cancer survivor and advocate, hosts NORDpod, the official podcast of the National Organization for Rare Disorders (NORD), a U.S.-based a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. On the podcast, Zachary interviews founders and CEOS of leading rare disease organizations, people affected by rare disease, expert physicians, researchers, genetic counselors and others about topics that impact, educate and inspire the rare disease community. According to one Apple Podcast reviewer, “Matthew Zachary is HILARIOUS — how does he tackle such heavy topics so gracefully and adding [sic] a spark of joy and fun? It’s magic! I feel warm and fuzzy after listening to each podcast — the voices and perspectives shared are SO INSPIRING.”
Click here to listen to NORDpod.
Andra Stratton was diagnosed with partial lipodystrophy at the age of 37; as the founder of Lipodystrophy United and now through public outreach and awareness campaigns, Andra has become a voice for people in the lipodystrophy and rare disease communities. As the host of the Rare in Common podcast, Stratton lifts the voices of other members of the rare disease community and experts in the field. Since Rare Disease Day 2018, Stratton has interviewed moms, dads, husbands, siblings, advocates, physicians, genetic counselors, geneticists, researchers and others, giving them the opportunity to share the stories that matter. One Apple podcast reviewer says, “This is a great series that focuses on the rare disease community but appeals to anyone who likes personal stories of overcoming adversity.”
Click here to listen to Rare in Common podcast.
Award-winning journalist Daniel Levine hosts RARECast, the official podcast of Global Genes, an organization working to eliminate the burdens and challenges of rare disease for families around the world. With more than 330 episodes since 2014, there are few topics RARECast hasn’t covered. RARECast listeners get to dive into the business, drug-development, research and policy aspects of rare disease as well as hearing stories from the people and families impacted by rare disease from around the world.
Click here to listen to Global Genes RARECast.
Self-described rare disease warriors Amy Vega and Allie Brown created the Dear Warriors podcast to help the rare disease community feel less isolated, better informed, and more engaged. Amy has worked in the plasma industry for 20 years and Allie Brown has lived with a number of rare diseases since she was a child, including Primary Immune Deficiency (PID), Reflex Sympathetic Dystrophy (RSD), Hashimoto’s thyroiditis, inflammatory bowel disease (IBD) and more. Allie shares her story in the first episode of the podcast and they invite other members of the community to share their stories in later episodes.
Click here to listen to the Dear Warriors podcast.
Sean Baumstark and Kyle Bryant are “Two Disabled Dudes,” affected by the rare disease Friedrich’s ataxia, which impacts their balance and coordination, significantly limiting their physical abilities. But that doesn’t stop them from hosting a podcast designed to help members of the rare disease community dream big and set their sights on big, hairy, ambitious goals. Their guests include leaders in the Rare Disease community, Paralympic athletes, notable Psychologists and accomplished public speakers and authors. One Apple Podcast reviewer said, “As a fellow rare disease patient advocate, I can never thank Kyle & Sean enough for their entertaining advocacy. I’ve learned so much from listening to the Two Disabled Dudes Podcast.”
Click here to listen to Two Disabled Dudes podcast.
Want to see our other Rare 5 Playlists? Check out “Five Songs That Inspire the Rare Disease Community.”