The National Organization for Rare Disorders (NORD) is a U.S. nonprofit advocacy organization focused on improving the lives of people with rare diseases. It works at the intersection of care, research, policy, and community, and serves as a hub for patients, families, and patient organizations.
Rare disease policy, patient access to care, biomedical research funding, orphan drug and treatment development, FDA and regulatory policy, health coverage and reimbursement issues, patient-centered research, and access to diagnostics and therapies.
Primarily grants and contracts, charitable contributions, individual donations, and fundraising events; it also accepts funding from the U.S. government and from pharmaceutical and biotechnology companies.
More than 340 patient advocacy organizations; rare disease patient communities; collaborations with researchers, clinicians, the FDA, and rare disease centers of excellence. NORD was founded by patients and families and is closely associated with rare disease advocacy leaders.
Non-profit 501(c)(3) charity
