Sharon Terry, MA


Sharon TerryChief Executive Officer, PXE International


Sharon F. Terry is President and CEO of Genetic Alliance, a network of more than 10,000 organizations, of which 1,200 are disease advocacy organizations.  Genetic Alliance enables individuals, families and communities to reclaim their health and become full participants in translational research and services.

She is the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). 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 and conducts clinical trials.

Terry is also a co-founder of the Genetic Alliance Registry and Biobank.  She is the author of more than 90 peer-reviewed articles.  In her focus at the forefront of consumer participation in genetics research, services and policy, she serves in a leadership role on many of the major international and national organizations, including the Institute of Medicine Science and Policy Board, the IOM Roundtable on Translating Genomic-Based Research for Health, the National Coalition for Health Professional Education in Genetics Board, the International Rare Disease Research Consortium Interim Executive Committee and as a member of the Board of Instigators for InvokeHealth! She is on the editorial boards of several journals. She was instrumental in the passage of the Genetic Information Nondiscrimination Act.  In 2005, she received an honorary doctorate from Iona College for her work in community engagement; the first Patient Service Award from the UNC Institute for Pharmacogenomics and Individualized Therapy in 2007; the Research!America Distinguished Organization Advocacy Award in 2009; and the Clinical Research Forum and Foundation’s Annual Award for Leadership in Public Advocacy in 2011.  In 2012, she became an honorary professor of Hebei United University in China, and also received the Facing Our Risk of Cancer Empowered (FORCE) Spirit of Empowerment Award. She is an Ashoka Fellow.