Genetic Alliance
Encyclopedia
Genetic Alliance is the world’s leading nonprofit
Non-profit organization
Nonprofit organization is neither a legal nor technical definition but generally refers to an organization that uses surplus revenues to achieve its goals, rather than distributing them as profit or dividends...
health advocacy
Health Advocacy
Health advocacy encompasses direct service to the individual or family as well as activities that promote health and access to health care in communities and the larger public. Advocates support and promote the rights of the patient in the health care arena, help build capacity to improve...
organization committed to improving health through the authentic engagement of communities and individuals. The organization was founded by Joan O. Weiss, a social work
Social work
Social Work is a professional and academic discipline that seeks to improve the quality of life and wellbeing of an individual, group, or community by intervening through research, policy, community organizing, direct practice, and teaching on behalf of those afflicted with poverty or any real or...
er, working with Victor A. McKusick
Victor A. McKusick
Victor Almon McKusick , internist and medical geneticist, was University Professor of Medical Genetics and Professor of Medicine at the Johns Hopkins Hospital, Baltimore, MD, USA...
, in 1986—four years before the Human Genome Project
Human Genome Project
The Human Genome Project is an international scientific research project with a primary goal of determining the sequence of chemical base pairs which make up DNA, and of identifying and mapping the approximately 20,000–25,000 genes of the human genome from both a physical and functional...
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.