Sharon F. Terry, M.A. (2019)

Sharon F. TerrySharon F. Terry, M.A., is the president and chief executive officer (CEO) of Genetic Alliance, a network of more than 10,000 organizations, 1,200 of which are disease advocacy organizations. Genetic Alliance engages individuals, families and communities to transform health. She is also the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), which affects Terry’s two adult children. As co-discoverer of the gene associated with PXE, she holds the patent for ABCC6 to act as its steward and has assigned her rights to the foundation. She developed a diagnostic test for the gene and conducts clinical trials. Terry is the author of 150 peer-reviewed papers, 30 of which are PXE clinical studies. She also is a co-founder of the Genetic Alliance Registry and BioBank. In her position at the forefront of consumer participation in genetics research, services and policy, Terry serves in a leadership role on many major national and international organizations, including the Precision Medicine Initiative Cohort Advisory Panel and the Accelerating Medicines Partnership.