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Rare As One Partner

February 2020 | Rare disease advocates gather on the steps of the Capitol Building in Washington, D.C. during Rare Disease Week 2020. The annual event is hosted by Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases.
February 2020 | Rare disease advocates gather on the steps of the Capitol Building in Washington, D.C. during Rare Disease Week 2020. The annual event is hosted by Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases.

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.

Learn How We Support Science

Science Funding

Learn more about funding apportunities.

Hear Rare Disease Stories

Hear Rare Disease Stories

Listen to The Story Collider podcast featuring stories about patients who are driving progress against rare disease.