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.
The EveryLife Foundation for Rare Diseases was founded by Dr. Emil Kakkis in 2009. Kakkis, a renowned geneticist, has dedicated his life to developing novel rare disease drug treatments for rare diseases that have saved the lives of thousands of children.
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.