Our RARE Young Adults are amazing storytellers. Oftentimes they create or are asked to participate in podcasts where they get to share their rare disease journey. Check out the latest podcasts from just some of our members!
WTNH News 8: Rare Disease Day
RARE Young Adults Leadership Academy graduate Jonathan Cappiello was featured on his local ABC affiliate for Rare Disease Day, sharing his story with an ultra-rare condition and advocacy via YARR and Rare Disease Week on Capitol Hill.
The OCD Stories: OCD and Chronic Illness
RARE Young Adults member Jessie Birnbaum and co-advocate Sandy Robinson discuss their OCD stories, living with OCD and chronic illnesses, going through therapy, self-compassion, setting up their special interest group for OCD and chronic illness, their experience of support groups, words of hope, and much more.
Intermountain PKU and Allied Disorders Association on PKU awareness
RARE Young Adults member Claire Oliver and her mother Amy Oliver discuss the science of phenylketonuria (PKU) and ways to advocate for improved medical nutrition coverage.
Anneliese Williams—The Power of Words
RARE Young Adults Leadership Academy graduate Anneliese Williams discuss the power of words in this episode of Making Our Way: A Team Joseph Podcast
The Handicapable Podcast: S2 E10: Nothing About Us Without Us
RARE Young Adults Member Avery Roberts was featured in an episode of The Handicapable Podcast, sharing her advocacy journey.
Learn About NMOSD feat. Patient Advocates Dr. Maggie Kang and Nell Choi
RARE Young Adults Member Nell Choi and her mother, Dr. Maggie Kang, were featured in an episode of Wait, How Do You Spell That? to discuss Nell’s experience being diagnosed with Neuromyelitis Optica Spectrum Disease (NMOSD).
1 of 20 Podcast
On the 1 of 20 Podcast, RARE Young Adults Leadership Academy graduate Jonathan Cappiello provides a platform for other rare disease community members to share their stories.
Patient Perspectives Podcast
On the Patient Perspectives Podcast, RARE Young Adults Member Lauren Schoeller shares patient stories and sheds light on the aspects of the patient-doctor relationship that truly matter to patients.
