-
- Genetic and Rare Diseases Information Center (GARD): GARD is a program of the National Center for Advancing Translational Sciences (NCATS) to provide access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.
-
- Genetics Education Materials for School Success (GEMSS): GEMSS is was developed by the New England Genetics Collaborative (NEGC), which became the New England Regional Genetics Network (NERGN) in June, 2017. Our goal is to promote awareness of and education about genetic conditions….
-
- Global Genes: Global Genes’ mission is to connect, empower and inspire the rare disease community.
-
- National Organization for Rare Disorders (NORD): NORD is a non-profit patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.
-
- Western States Regional Genetics Network (WSRGN): WSRGN is a federally-funded, multi-state project that seeks to increase access to genetic services and education for medically underserved populations. The participating states and territory are Alaska, California, Guam, Hawaii, Idaho, Oregon, and Washington.
-
- EveryLife Foundation: The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. The Foundation does not speak for patients, but instead provides the training, education, resources and opportunities to make patient voices heard. By activating the patient advocate, the Foundation believes it can change public policy and save lives.
