Sharon Terry

CEO, Genetic Alliance

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 engages individuals, families and communities to transform health. She is the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). PXE 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 and conducts clinical trials. She is the author of 140 peer-reviewed papers, of which 30 are PXE clinical studies. Terry is also a co-founder of the Genetic Alliance Registry and Biobank. 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 Accelerating Medicines Partnership, Institute of Medicine (IOM) Science and Policy Board, the IOM Roundtable on Translating Genomic-Based Research for Health, the PubMed Central National Advisory Committee, the PhenX scientific advisory board, the Global Alliance for Genomics and Health, the International Rare Disease Research Consortium Executive Committee and as Founding President of EspeRare Foundation of Geneva, Switzerland. She is on the editorial boards of several journals and is an editor of Genome. She led the coalition that was instrumental in the passage of the Genetic Information Nondiscrimination Act. She received an honorary doctorate from Iona College for her work in community engagement in 2006; 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 Tangshan, China, and also received the Facing Our Risk of Cancer Empowered (FORCE) Spirit of Empowerment Advocacy Award. She was named one of FDA’s “30 Heroes for the Thirtieth Anniversary of the Orphan Drug Act” in 2013. In 2012 and 2013, Terry won $400,000 in first prizes in three large competitions for the Platform for Engaging Everyone Responsibly (PEER). PEER was awarded a $1M contract from PCORI in 2014. Terry is an Ashoka Fellow. With her husband Patrick, she is an avid paragliding pilot, rock climber and weekend farmer.

Interview: Consumers Leading the Shift in Healthcare:  Sharon Terry, Genetic Alliance