Sharon Terry

Ashoka Fellow
Washington, District of Columbia, United States
Fellow Since 2009


This profile was prepared when Sharon Terry was elected to the Ashoka Fellowship in 2009.
The New Idea
Sharon believes that meaningful progress in policy, health care, and research requires a patient/parent network in partnership with scientists, industry and policy makers. Sharon bridges the gap between science and the health needs of society by enabling parents and patients living with genetic conditions, science, government, industry and the citizen sector to collaborate in the development of treatments for rare and neglected genetic diseases. Her goal is to create systems that catalyze communities of scientific excellence, healthcare equity, and effective systems speeding the translation of knowledge gained in the laboratory into medicines. In the process, she unites the genetics community around shared goals and resources, and shifts the tenor (and action) of the community from staid advocacy to proactivity and changemaking.
The Problem
The Strategy
The Person


We have developed the Platform for Engaging Everyone Responsibly (PEER) to enable participants in health care services and biomedical research to share their health information using granular and dynamic sharing, privacy and access preferences. People control who sees what data, when. See more at Featured in The Rise of the Reluctant Innovator, by Ken Banks (2013)

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