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 to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures. - The national economic burden of 379 rare diseases reached nearly $1 trillion in the U.S. in 2019. - In the United States, a disease is defined as rare when it affects fewer than 200,000 people. - More than thirty million Americans (one in 10) live with one or more rare diseases. - 93% – 95% of the more than 10,000 known rare diseases have no U.S. Food and Drug Administration-approved therapies. - Rare disease patients wait an average of 6.3 years after symptoms present before receiving a confirmed diagnosis, having received several incorrect diagnoses during that time. - The U.S. Food and Drug Administration process for approval of a rare disease drug (referred to as “orphan”) can take an average of 15 years.