TERRY Sharon

Sharon F. Terry is President and CEO of Genetic Alliance, where she leads a global coalition of disease advocacy organizations dedicated to transforming health through patient engagement, data stewardship, and collaborative research. Since the mid-1990s, she has been a key figure in promoting people-driven approaches that place individuals, families, and communities as active partners in science, care, and policy.
Under her leadership, Genetic Alliance has developed models that empower individuals to control their own health and data, speed up the translation of research into services, and support informed, personalized decision-making.
Sharon co-founded PXE International, established after two of her children were diagnosed in 1994 with pseudoxanthoma elasticum (PXE). PXE International is widely recognized for demonstrating how families can drive discovery and establish novel care pathways. She is the author of more than 200 peer-reviewed publications and her story has been featured in a TED Talk and the TED Radio Hour.
Sharon has held influential leadership roles nationally and internationally, including co-founder of the International Rare Disease Research Consortium, GA4GH, and EspeRare. She is an assistant professor at Tufts University and has an honorary doctorate from Iona University in New Rochelle, NY, for her work in community engagement.
An Ashoka Fellow since 2009, Sharon has received numerous awards and honors. She is a mother and grandmother. Her daughter and son, their wives, and her granddaughter remain central to discovering what to do with her one precious life.