Sharon F. Terry is President and CEO of the Genetic Alliance. She is the founding CEO of PXE International, a research & advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), a condition that affects her two children. Ms. Terry is also co-founder of Genetic Alliance Registry & Biobank, a centralized lay run biological and data repository catalyzing translational genomic research on genetic diseases.
She is at the forefront of consumer participation in genetics research, services and policy and serves as a member of many of the major governmental advisory committees on biomedical research, including liaison to the Secretary’s Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children and the National Advisory Council for Human Genome Research, NHGRI, NIH. She serves on the boards of the Institute of Medicine Science and Policy, GRAND Therapeutics Foundation, the Center for Information & Study on Clinical Research Participation, National Coalition of Health Professional Education in Genetics, and the Google Health and Rosalind Franklin Society.
She received an honorary doctorate from Iona College; the first Patient Service Award from the UNC Institute for Pharmacogenomics and Individualized Therapy; the Research!America Distinguished Organization Advocacy Award and the Clinical Research Forum and Foundation’s Annual Award for Leadership in Public Advocacy. She is an Ashoka Fellow.