Sharon Terry
President and Chief Executive Officer
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 patient-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 genomic data, speed up the translation of research into services, and support informed, personalized decision-making. She led the national coalition that successfully passed the Genetic Information Nondiscrimination Act (GINA), establishing vital protections for individuals and families. Sharon is also a co-founder of 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. Her scientific contributions include co-discovering the ABCC6 gene, developing a diagnostic test, leading clinical trials, and creating the first lay-led registry, biobank, IRB, and research consortium in advocacy history. She is the author of more than 200 peer-reviewed publications, including over 50 focused on PXE, 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 Chair of the National Academies of Medicine Board on Health Sciences Policy and participation in the Accelerating Medicines Partnership. She is a co- founder of International Rare Disease Research Consortium, GA4GH, and serves as President of EspeRare. An Ashoka Fellow since 2009, Sharon has received numerous honors, including the American Society of Human Genetics Advocacy Award, FDA Hero, and Research!America’s Distinguished Organization Advocacy Award. She is also CFO of the Gestalt Practice Library and Resource Center and a long-time student and facilitator of Gestalt Awareness Practice. 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.
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