26 Jan EveryLife Foundation for Rare Diseases
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.
Rare Disease Legislative Advocates (RDLA), supported by EveryLife, coordinates Rare Disease Week on Capitol Hill to bring rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.