Sharon Terry

Sharon F. Terry is President and CEO of Genetic Alliance, an enterprise engaging individuals, families and communities to transform health. She co-founded PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), after her two children were diagnosed with PXE in 1994. She co-discovered the ABCC6 gene and developed a diagnostic test. An Ashoka Fellow, Terry has authored 150 peer-reviewed articles and has received international recognition for her work. She presented a TED Talk based on her story. At the forefront of consumer participation in genetic research, services and policy, she serves in a leadership role on many major international and national organizations.