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Sharon Terry

Sharon Terry, MA –President and CEO, Genetic Alliance Sharon is President and CEO of the Genetic Alliance, a network transforming health by promoting an environment of openness centered on the health of individuals, families and communities. She is the founding Executive Director of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). Following the diagnosis of their two children with pseudoxanthoma elasticum (PXE) in 1994, Sharon, a former college chaplain, and her husband, Patrick, founded and built a dynamic organization that fosters ethical research and policies and provides support and information to members and the public. She is at the forefront of consumer participation in genetics research, services and policy and serves as a member of many of the major governmental advisory committees on medical research, including liaison to the Secretary’s Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children and the National Advisory Council for Human Genome Research, NHGRI, NIH. She serves on the boards of the Biotechnology Institute, DNA Direct, National Coalition of Health Professional Education in Genetics, and the Coalition for 21st Century Medicine. She is on the steering committees of Genetic Association Information Network of NHGRI, the CETT program, the EGAPP Stakeholders Group and the Google Health Advisory Board. She is the chair of the Coalition for Genetic Fairness that was instrumental in the passage of the Genetic Information Nondiscrimination Act. She is a member of the IOM Roundtable on Translating Genomic-Based Research for Health. She is chair of the Social Issues Committee of American Society of Human Genetics. In 2005, she received an honorary doctorate from Iona College for her work in community engagement and haplotype mapping, and in 2007 received the first Patient Service Award from the UNC Institute for Pharmacogenomics and Individualized Therapy. Ms. Terry is a co-founder of the Genetic Alliance Biobank. It is a centralized biological and data [consent/clinical/environmental] repository catalyzing translational genomic research on rare genetic diseases. The BioBank works in partnership with academic and industrial collaborators to develop novel diagnostics and therapeutics to better understand and treat these diseases. Along with the other co-inventors of the gene associated with PXE (ABCC6), she holds the patent for the invention. She co-directs a 33-lab research consortium and manages 52 offices worldwide for PXE International.

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