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Sharon F. Terry (born November 16, 1956) in Waterbury, Connecticut is a health advocate. She co-founded PXE International when her children were diagnosed with pseudoxanthoma elasticum (PXE) in 1994. In 2009, she was elected an Ashoka Fellow〔http://usa.ashoka.org/fellow/sharon-terry〕 for her entrepreneurial work in drug development for genetic conditions. == Professional background == She is the current President and CEO of Genetic Alliance, and Executive Director of PXE International,〔http://www.pxe.org〕 a research organization for the genetic disorder pseudoxanthoma elasticum (PXE). She is co-founder of the Genetic Alliance Registry and Biobank. She is the chair of the Coalition for Genetic Fairness that advocated for the passage of the Genetic Information Nondiscrimination Act. She is on the Secretary's Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children and the National Advisory Council for Human Genome Research, is associated with the National Human Genome Research Institute. She also serves on the boards of the Institute of Medicine Board on Health Sciences Policy,〔http://www.iom.edu/About-IOM/Leadership-Staff/Boards/Board-on-Health-Sciences-Policy.aspx〕 National Coalition of Health Professional Education in Genetics, The Rosalind Franklin Society, and the Coalition for 21st Century Medicine. In 2005, Terry 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 also accepted the Paul G. Rogers Distinguished Advocacy Organization Award from Research!America in 2009.〔http://www.researchamerica.org/release_09mar24_rogers〕 In 2012, she received the Spirit of Empowerment Advocacy Award, Facing Our Risk of Cancer Empowered,〔http://www.facingourrisk.org/events/annual_conference/annual_awards.php〕 and was given an Honorary Professorship, at Hebei United University, Tangshan, China. In 2013, she was named one of the Food and Drug Administration's Rare Disease Heros.〔http://www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/OOPDNewsArchive/ucm341676.htm#terry〕 She also serves as the President of Schola Ministries, a nonprofit dedicated to producing the music of Kathleen Deignan. Her work includes novel data-sharing projects such as Registries for All, winner of the Transforming Health Systems Ashoka Changemakers Award.〔http://www.changemakers.com/healthbiz/entries/reg4all〕〔https://www.reg4all.org〕 She served on the Institute of Medicine Committee on the Necessity of Use of Chimpanzees in Biomedical and Behavioral Research〔http://chronicle.com/article/Chimp-Research-Is-Sharply/130112/〕 and the IOM Committee on a Review of the California Institute for Regenerative Medicine.〔http://www.iom.edu/Activities/Research/CIRMReview.aspx〕 She is the co-chair of the Institute of Medicine's Roundtable on Translating Genomic Based Research for Health.〔http://www.iom.edu/Activities/Research/GenomicBasedResearch.aspx〕 抄文引用元・出典: フリー百科事典『 ウィキペディア（Wikipedia）』 ■ウィキペディアで「Sharon F. Terry」の詳細全文を読む スポンサード リンク
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