Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to improving health through the authentic engagement of communities and individuals. 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. The Genetic Alliance network includes all stakeholders in the genetics and health community, including disease-specific organizations, healthcare providers, professional societies, industry groups, academic institutions, researchers, policymakers, and consumers. President and Chief Executive Officer Sharon Terry leads the Genetic Alliance staff, Council, and network on an innovative journey of novel partnerships, connected consumers, and smart services.
Genetic Alliance manages a biobank.[1]