EveryLife Foundation for Rare Diseases
A rare disease in the United States affects fewer than 200,000 people, however more that 30 million Americans live with one or more rare diseases. Fifty percent of these rare disease patients are children. The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.