| 词条 | Sharon F. Terry |
| 释义 |
}}{{Infobox person | name = Sharon F. Terry | image = Sharon_F_Terry_headshot_2013.jpg | image size= 125px | birth_date = {{birth date and age|1956|11|16}} | occupation = health care advocate | education = State University of New York at Stony Brook, Assumption College }} Sharon F. Terry (born November 16, 1956 in Waterbury, Connecticut) is a health advocate in Washington, D.C. She co-founded PXE International when her children were diagnosed with pseudoxanthoma elasticum (PXE) in 1994[1]. Her recent TEDMED talk[2] has been viewed more than a million times, and was the subject of the TED Radio Hour[3]. In 2009, she was elected an Ashoka Fellow[4] for her entrepreneurial work in engagement and the development of interventions for genetic conditions. Professional backgroundShe is the current President and CEO of Genetic Alliance,[5] and Executive Director of PXE International,[6] a research organization for the genetic disorder pseudoxanthoma elasticum (PXE). She is co-founder of the Genetic Alliance Registry and Biobank,.[7] She is the chair of the Coalition for Genetic Fairness that advocated for the passage of the Genetic Information Nondiscrimination Act.[8] She also serves on the Advisory Panel for the Precision Medicine Initiative,[9] boards of the National Academy of Medicine Board on Health Sciences Policy [10] and many other health and research related organizations. 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.[11] She also accepted the Paul G. Rogers Distinguished Advocacy Organization Award from Research!America in 2009.[12] In 2012, she received the Spirit of Empowerment Advocacy Award, Facing Our Risk of Cancer Empowered,[13] 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 Heroes.[14] She also serves as the President of Schola Ministries, a nonprofit dedicated to producing the music of Kathleen Deignan.[15] Her work includes novel data-sharing projects such as Registries for All,[16] winner of the Transforming Health Systems Ashoka Changemakers Award.[17][18] She served on the Institute of Medicine Committee on the Necessity of Use of Chimpanzees in Biomedical and Behavioral Research[19] and the IOM Committee on a Review of the California Institute for Regenerative Medicine.[20] She is the co-chair of the National Academy of Medicine's Roundtable on Genomics and Precision Medicine.[21] References1. ^https://www.nytimes.com/2000/05/23/science/a-family-s-goal-is-met-and-a-gene-is-found.html 2. ^[https://www.ted.com/talks/sharon_terry_science_didn_t_understand_my_kids_rare_disease_until_i_decided_to_study_it 3. ^https://www.npr.org/2017/09/29/554102828/sharon-terry-when-siblings-get-a-rare-diagnosis-can-their-parents-find-the-cure 4. ^http://usa.ashoka.org/fellow/sharon-terry 5. ^{{cite web|url=http://www.geneticalliance.org/bio.terry |title=Sharon Terry |publisher=Genetic Alliance |date= |accessdate=2011-03-05}} 6. ^http://www.pxe.org 7. ^https://www.bloomberg.com/news/articles/2013-03-21/innovator-sharon-terrys-global-database-for-disease-research 8. ^{{cite web|url=http://www.genome.gov/27528106 |title=All About the Genetic Information Non-Discrimination Act of 2008 (GINA) |publisher=Genome.gov |date= |accessdate=2011-03-05}} 9. ^https://www.nih.gov/precision-medicine-initiative-cohort-program/sharon-terry-ma 10. ^{{cite web |url=http://www.iom.edu/About-IOM/Leadership-Staff/Boards/Board-on-Health-Sciences-Policy.aspx |title=Archived copy |accessdate=2013-08-08 |deadurl=yes |archiveurl=https://web.archive.org/web/20100114184649/http://www.iom.edu/About-IOM/Leadership-Staff/Boards/Board-on-Health-Sciences-Policy.aspx |archivedate=2010-01-14 |df= }} 11. ^{{cite web |url=http://www.ipit.unc.edu/menu/you_connect/news/news_list.php |title=IPIT Good |publisher=Ipit.unc.edu |date= |accessdate=2011-03-05 |deadurl=yes |archiveurl=https://web.archive.org/web/20110720092639/http://www.ipit.unc.edu/menu/you_connect/news/news_list.php |archivedate=2011-07-20 |df= }} 12. ^http://www.researchamerica.org/release_09mar24_rogers 13. ^http://www.facingourrisk.org/events/annual_conference/annual_awards.php 14. ^http://www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/OOPDNewsArchive/ucm341676.htm#terry 15. ^{{cite web|url=http://www.scholaministries.org/schola-ministries/ |title=About |publisher=Schola Ministries |date= |accessdate=2011-03-05}} 16. ^https://www.bloomberg.com/news/articles/2013-03-21/innovator-sharon-terrys-global-database-for-disease-research 17. ^http://www.changemakers.com/healthbiz/entries/reg4all 18. ^https://www.reg4all.org 19. ^http://chronicle.com/article/Chimp-Research-Is-Sharply/130112/ 20. ^{{cite web |url=http://www.iom.edu/Activities/Research/CIRMReview.aspx |title=Archived copy |accessdate=2012-01-25 |deadurl=yes |archiveurl=https://web.archive.org/web/20110815172806/http://www.iom.edu/Activities/Research/CIRMReview.aspx |archivedate=2011-08-15 |df= }} 21. ^https://www.nationalacademies.org/hmd/Activities/Research/GenomicBasedResearch.aspx External links
5 : Living people|1956 births|Assumption College alumni|Iona College (New York) alumni|Stony Brook University alumni |
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