Sharon F. Terry

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Sharon F. Terry (born November 16, 1956, is a social entrepreneur in the health advocacy sector. She founded PXE International, with her husband, Patrick Terry, after the diagnosis of her children with pseudoxanthoma elasticum (PXE) in 1994.

She is the current President and CEO of 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). She co-directs a 33-lab research consortium and manages 52 offices worldwide for PXE International. Ms. Terry is a co-founder of the Genetic Alliance Biobank. Her work includes advocating for the Genetic Information Nondiscrimination Act.

She serves on boards for the Institute of Medicine, National Institutes of Health, Coalition for 21st Century Medicine and National Coalition for Health Professional Education in Genetics.

Terry is committed to bringing together diverse stakeholders that create novel partnerships in advocacy; integrating individual, family, and community perspectives to improve health systems; and revolutionizing access to information to enable translation of research into services and individualized decision making. She lives with her husband Patrick and their two children in Maryland.

She serves as Secretary’s Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children and the National Advisory Council for Human Genome Research, National Human Genome Research Institute, National Institutes of Health. She also serves on the boards of the Biotechnology Institute, National Coalition of Health Professional Education in Genetics, The Rosalind Franklin Society, and the Coalition for 21st Century Medicine. 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 Institute of Medicine Roundtable on Translating Genomic-Based Research for Health. She is past 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. She was elected an Ashoka Fellow in 2009 for her entrepreneurial work on consumer involvement in health, medicine, genomics and genetics.

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