President & CEO, Genetic Alliance
Sharon is President and CEO of Genetic Alliance, a large health advocacy network that engages individuals, families and communities to transform health. She is the founding CEO of PXE International, a research advocacy organization for pseudoxanthoma elasticum (PXE), which affects her children. She is the author of 140 peer-reviewed papers. Terry is also a co-founder of the Genetic Alliance Registry and Biobank. She serves in a leadership role in many of the major international and national organizations, including the Institute of Medicine (IOM) Science and Policy Board, and on editorial boards of several journals. She helped lead the passage of the Genetic Information Nondiscrimination Act. She has received numerous awards.