Rare Disease in the U.S. 2025
Findings from the First Probability-based National Survey to Measure the Rare Disease Population

Susannah Fox Helps People Navigate Health and Technology
Susannah Fox is a health and technology strategist. Her book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, was published by MIT Press in 2024. 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.
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