The Genetic Alliance, based in Washington DC, is one of the world’s leading nonprofit health advocacy organizations. The organization engages individuals, families, and communities, and facilitates the process of finding information and interventions for disease, searching for health information, and/or trying to find ways to participate in research.
The Genetic Alliance publishes Understanding Genetics, an educational resource for knowledgeable consumers and health professionals, particularly those without specialty training in genetics. The manual begins with a basic introduction to genetics concepts, followed by detailed information on topics such as diagnosis of genetic conditions, family history, newborn screening, genetic counseling, understanding patient stories, and ethical, legal, and social issues in genetics. The manual is customizable by geographic region and includes specific resources to assist in patient care, patient and professional education, and locating specialty genetic services. It was written and reviewed by a wide variety of stakeholders in the genetics and health community.