Genetic Alliance is a 501 (c)(3) not-for-profit organization that transforms health through genetics, promoting an environment of openness centered on the health of individuals, families, and communities. Genetic Alliance brings together diverse stakeholders that create novel partnerships in advocacy; integrates individual, family, and community perspectives to improve health systems; and revolutionizes access to information to enable translation of research into services and individualized decision making.
The organization was founded by Joan O. Weiss, a social worker, working with Victor A. McKusick, in 1986—four years before the Human Genome Project was launched. It began as an umbrella organization for disease-specific advocacy organizations. More than twenty years later, in partnership with healthcare providers, industry and academia, Genetic Alliance leads the cutting edge of advocacy and consumer interests in public policy relevant to genetics and genomics.
Genetic Alliance is committed to fostering openness and transparency in all projects and interactions. It enables perspective sharing by people in the genetics community, including advocates, healthcare providers, industry leaders, researchers, and other not-for-profit organizations in health and/or science.
Genetic Alliance works with extensively with National Institutes of Health, Centers for Disease Control and Prevention, and HRSA. In 2006, Genetic Alliance celebrated advocates in a Gala 20th Anniversary Celebration at National Geographic Society.
Genetic Alliance led the Coalition for Genetic Fairness, a group of 500 organizations, which worked to pass the Genetic Information Nondiscrimination Act[1]. In 2008, Genetic Alliance celebrated the passage of GINA for which Francis S. Collins created a song, complete with a dance[2]. They also awarded the Art of Transformational Leadership to Francis Collins, as he left the director position of National Human Genome Research Institute[3].
In 2009, Genetic Alliance received the Paul G. Rogers Distinguished Organization Advocacy Award from Research!America. Genetic Alliance was also named one of Washingtonian Magazine's Top 50 Great Places to Work[4] in 2009.
Genetic Alliance is a Washington, DC based organization. Sharon F. Terry is the President & CEO.
References
- ^ http://pharmexec.findpharma.com/pharmexec/Discovery+NewsWire/Coalition-for-Genetic-Fairness-Celebrates-Passage-/ArticleNewsFeed/Article/detail/531510?ref=25
- ^ http://www.youtube.com/watch?v=0Vvzav1840s
- ^ http://www.youtube.com/view_play_list?p=C6993796FA2EA0B5
- ^ http://www.geneticalliance.org/ws_display.asp?filter=pr.washingtonian
- Terry SF, Terry PF, Rauen KA, Uitto J, Bercovitch LG (2007) Advocacy groups as research organizations: the PXE International example. Nat Rev Genet 8:157-164
- Lin AE, Terry SF, Lerner B, Anderson R, Irons M. Participation by clinical geneticists in genetic advocacy groups. Am J Med Genet. 2003 May 15;119A(1):89-92.
- Terry SF. Learning genetics. Health Aff (Millwood). 2003 Sep-Oct;22(5):166-71.
- Terry SF, Davidson ME. Meeting the Needs of Affected Individuals in the New Genetics Age. Exceptional Parent, December 2000.
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