Rare As One Partner
EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community. In particular, the foundation supports patients advocating for science-driven public policy that advances the development of and equitable access to lifesaving diagnoses, treatments, and cures. The EveryLife Foundation for Rare Diseases believes in activating the patient voice in order to change public policy and save lives
Since its founding in 2009, the EveryLife Foundation has revolutionized the way rare disease organizations collaborate on common goals. Each year, the Foundation engages thousands of advocates and patient organizations around urgent issues impacting the rare disease community. Among the Foundation’s groundbreaking policy projects is the release of the National Economic Burden of Rare Disease Study, the most comprehensive assessment of the total cost of rare diseases in the U.S. to date.
The Chan Zuckerberg Initiative supports the EveryLife Foundation in its efforts to make patient voices heard through advocacy and educational programs such as the Rare Disease Scientific Workshop, Rare Disease Legislative Advocates (RDLA), Young Adult Representatives of RDLA, Community Congress, Rare Hub, and many more.