National Organization for Rare Disorders (NORD)

Founded in 1983, NORD supports the 30 million Americans living with approximately 7,000 rare diseases by driving advances in care, research, and policy. It pioneered Patient Assistance Programs in 1987, operates the IAMRARE patient registry platform, and maintains a disease database covering over 1,200 conditions. NORD also runs the Rare Disease Centers of Excellence network and produces an annual State Report Card evaluating rare disease policy across all US states.