National Organization for Rare Disorders (NORD)

National Organization for Rare Disorders (NORD), founded in 1983, is a leading US-based nonprofit dedicated to supporting the approximately 30 million Americans living with around 7,000 rare diseases. It works to advance patient care, research, and public policy across the rare disease landscape.

NORD pioneered Patient Assistance Programs in 1987, providing financial support to help patients access essential medications and treatments. It also operates the IAMRARE registry platform, which enables patient groups to collect and use data to support research and improve understanding of rare conditions.

In addition, NORD maintains a comprehensive disease database covering more than 1,200 rare disorders, offering accessible information for patients, families, and healthcare professionals. It also leads the Rare Disease Centers of Excellence network, which aims to improve standards of care and coordination across specialist centres.

NORD plays a key role in shaping policy through advocacy and research, including its annual Rare Disease State Report Card, which evaluates and compares how effectively US states address the needs of rare disease patients.