Sharon Fontaine Terry

Ashoka Fellow
Fellow Since 2009
Genetic Alliance


This profile was prepared when Sharon Fontaine 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

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