EveryLife Foundation for Rare Diseases

Public Policy OfficesDistrict of Columbia, United States51-200 Employees

The EveryLife Foundation for Rare Diseases is a nonprofit organization focused on shaping public policy to improve health outcomes for people with rare diseases. It pursues these goals through evidence-based policy work and science-driven policy and regulatory research, aiming to inform lawmakers and regulators. The foundation also mobilizes the rare disease community to advocate for their rights and needs and seeks to strengthen the community as a whole.

Based in Washington, DC, it serves patients, families, and advocates affected by rare diseases and collaborates with partners to advance patient-centered policy decisions. Recent activity includes participation in Rare Disease Week 2026 on Capitol Hill, illustrating ongoing engagement with policymakers and allied organizations.

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