Rebel Health: How Rare Disease Communities Lead the Revolution — 2023 RARE Advocacy Summit

The 2023 RARE Advocacy Summit closed with Susannah Fox, who shared how the rare disease community led the way for patient-driven innovations in healthcare, also the topic of her book.

Susannah Fox is a health and technology strategist. Her book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, will be published in February 2024 by MIT Press. She is a former Chief Technology Officer for the U.S. Department of Health and Human Services, where she led an open data and innovation lab. She has served as the entrepreneur-in-residence at the Robert Wood Johnson Foundation and she directed the health portfolio at the Pew Research Center’s Internet Project.