Radio and PodcastRadio and PodcastLive Radio & Podcasts
Capturing the Lived Experience of Rare Disease artwork
Business

Capturing the Lived Experience of Rare Disease

RARECast by RARECast

May 21, 202600:39:57Business

When Kasey Walsh's daughter was diagnosed with an ultra-rare genetic disorder, she discovered a frustrating paradox: researchers desperately needed insights from patient families, yet institutional barriers made it nearl...