National Organization for Rare Disorders Email Format

Non-profit OrganizationsConnecticut, United States51-200 Employees

The National Organization for Rare Disorders (NORD) is an independent nonprofit that supports individuals affected by rare diseases and the networks that assist them. It coordinates a broad alliance of more than 350 patient organizations and pursues education, advocacy, research, and patient support to advance identification, treatment, and, where possible, cures. NORD engages a wide range of stakeholders, including patients, families, researchers, clinicians, medical students, and companies developing orphan products.

Based in Danbury, Connecticut, NORD works with U.S. government agencies such as the NIH and FDA to advance policy and resources for the rare-disease community. In June 2026, the Facial Pain Registry reached its one-year anniversary, a patient data initiative developed in partnership with NORD on the IAMRARE platform.

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