Hear voices of the rare disease community!
No two rare journeys are the same, but they are very similar. Raising Rare focuses on two parents’, two families’ stories as they navigate their way along a largely uncharted path: the search for treatment, help, and strength raising a rare child.
Sanath is on a journey to find a treatment for his son’s ultra rare genetic disorder.
Brittany’s daughter has a unique variant of another rare genetic disorder.
The podcast also features stories of other rare disease families, clinicians, researchers and Industry leaders in the rare disease community.
Raising Rare was nominated for a 2021 WEGO Health Award
Congratulations to Once Upon a Gene for winning Best In Show Podcast
Latest Episodes
Educating the rare disease community
Every other week, we bring you a diverse spectrum of rare stories focused on finding treatments for rare conditions. These real stories are shared by people who shape this community - Rare disease families, patients, researchers, clinicians and Industry leaders and more.
