In this episode of On Rare: Innovators, hosts David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Senior Director of Patient Advocacy at BridgeBio, speak with Kat Bryant Knudson, Founder and CEO of the Speak Foundation and a leader in the limb-girdle muscular dystrophy (LGMD) community. Diagnosed as a child after experiencing early symptoms of muscle breakdown, Kat spent years searching for answers before receiving a definitive genetic diagnosis. What began as a personal journey to understand her condition evolved into a lifelong commitment to ensuring that no one with LGMD faces that journey alone.

From founding the Speak Foundation in an unexpected twist of fate to organizing groundbreaking scientific workshops that bring patients, researchers, industry, and the FDA to the same table, Kat has helped reshape how the LGMD community connects, advocates, and advances research. Guided by the belief that people with lived experience should have the loudest voice in the room, Kat continues to innovate on behalf of a diverse and growing rare disease community.

Kat’s story is a reminder that progress begins with connection, shared experience, and the courage to speak up.

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