EveryLife Foundation for Rare Diseases

The EveryLife Foundation for Rare Diseases is powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading science-driven policy and regulatory research, activating the community to advocate for their rights and needs, and strengthening the rare disease community. - The [national economic burden](https://everylifefoundation.org/burden-study/) 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.