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Genetic Alliance is an umbrella organization for disease-specific advocacy organizations. It was founded by Joan O. Weiss, a social worker, working with Victor McKusick, in 1986—four years before the Human Genome Project was launched. More than twenty years later, in partnership with health 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 enables transformational leadership in advocates, and increases the capacity of advocacy organizations to achieve their missions. It also leverages the voices of millions of individuals and families living with genetic conditions. Genetic Alliance provides leadership and infrastructure development for more than 600 disease-specific advocacy organizations, representing over 1000 diseases, affecting over 25 million Americans.
It is committed to building capacity in all communities. Genetic Alliance provides technical assistance to advocates and their organizations resulting in measurable growth: increased funding for research, access to services, and support for emerging technologies.
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 Anniversary Celebration at National Geographic Society.
Genetic Alliance is a Washington, DC based organization. Sharon F. Terry is the President & CEO.
References 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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