National Organization for Rare Disorders, Inc.

The National Organization for Rare Disorders (NORD®) is a leading patient advocacy organization dedicated to improving the health and well-being of individuals affected by rare diseases. Established in 1983, NORD's core mission is to drive advances in care, research, and policy for the rare disease community. The organization is headquartered in Danbury, Connecticut, with additional offices in Quincy, Massachusetts, and Washington, D.C.

NORD provides a comprehensive suite of services, including advocacy, research support, educational initiatives, and patient assistance programs. Key offerings include the IAMRARE® program, which facilitates natural history studies and patient registries, and seed grants for academic research into rare diseases. NORD also maintains a Rare Disease Database, offering information on over 1,200 rare conditions, and administers patient assistance programs that help with co-pays, medication, and access to specialized medical care. The organization's Rare Action Network® mobilizes grassroots advocacy, and its NORD Rare Disease Centers of Excellence network connects medical centers to foster expertise and collaborative research.

Pamela K. Gavin was appointed Chief Executive Officer of NORD in May 2024. In recent activities, NORD announced its 2025 Industry Innovation and Rare Impact Award Honorees in July 2025 and allocated $245,000 in seed grant funding for rare disease research in August 2025. The organization also released its 2025 State Report Card in February 2026, evaluating rare disease policies across all 50 states, and hosted its 2025 NORD Breakthrough Summit in October 2025. NORD continues to serve as a central hub for the rare disease community, representing over 340 patient advocacy organizations and more than 40 Rare Disease Centers of Excellence.