Rare Disease Organizations

Rare disease organizations, like those listed below, advocate for patients and families, drive research and policy changes, and connect the rare disease community. Some offer financial assistance, support members in legislative advocacy, provide group events, and offer opportunities to gather with others affected by rare diseases.

National Organization for Rare Disease: helps individuals and families affected by rare diseases through education, advocacy, research support, patient assistance programs, and by connecting patients with specialists and resources.

Everylife Foundation: The EveryLife Foundation for Rare Diseases is powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading science-driven policy and regulatory research, activating the community to advocate for their rights and needs, and strengthening the rare disease community.

Global Genes: Global Genes is a rare disease umbrella advocacy organization that supports rare disease patients and advocates [regardless of diseases] as individuals or their organizations through educational programs, resources and tools.

 

 

 

Also In This Section