Presented by SHE Media

Building a Patient-Driven Movement: Accelerating Research for Rare Diseases

Mar 11, 2023

2:55pm – 3:35pm CT

Speakers: Katie Couric,Tania Simoncelli, Dr. David Fajgenbaum, Brian Wallach & Sandra Abrevaya

Where do you turn after being diagnosed with a rare disease? The Chan Zuckerberg Initiative knows there is power in numbers. Their Science in Society program is on a mission to cure, prevent or manage all disease by centering patients as experts in the research process. Tania Simoncelli, VP of Science in Society at CZI; Dr. David Fajgenbaum, a rare disease patient and renowned researcher and Rare As One grantee; Brian Wallach, ALS patient advocate; and Sandra Abrevaya, an advocate and caregiver, discuss reinventing the research ecosystem, galvanizing a patient-driven movement, and how to turn intentions into change.

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