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Concept
Genetic Alliance
Résumé
Genetic Alliance is a nonprofit organization, founded in 1986 by Joan O. Weiss, working with Victor A. McKusick, to advocate for health benefits in the accelerating field of genomic research. This organization is a network of over 1,000 disease advocacy organizations, universities, government organizations, private companies, and public policy organizations. They aim to advance genetic research agendas toward health benefit by engaging a broad range of stakeholders, including healthcare providers, researchers, industry professionals, public policy leaders, as well as individuals, families and communities. They create programs using a collaborative approach, and aim to increase efficiency and reduce obstacles in genetic research, while ensuring that voices from the involved disease communities are heard. They also promote public policies to advance healthcare. Genetic Alliance provides technical support and informational resources to guide disease-specific advocacy organizations in being their own research advocates. They also maintain a biobank as a central storage facility for several organizations who otherwise would not have the infrastructure to maintain their own repository.
The organization was founded in 1986 by Joan O. Weiss, working with Victor A. McKusick, to advocate for health benefits in the accelerating field of genomic research. The organisation is an umbrella organisation for a number of charities dealing with genetic diseases. The founding chair of the Genetic Alliance in 1989 was Ann Mercy Hunt who had founded the Tuberous Sclerosis Association.
Genetic Alliance manages a biobank, the Genetic Alliance Registry and Biobank (GARB), which is a cooperatively-managed clinical data and tissue sample repository. GARB was established in 2003, and combines its standardized infrastructure with the interests and motivations of disease advocacy groups to develop effective diagnostic tools and treatments, to “accelerate the research enterprise beyond its usual pace and involving new players, the advocates.
Source officielle
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