The National Organization for Rare Disorders (NORD) has established a unique network of medical centers, clinics, and institutions to advance care and expand access for rare disease patients. The centers promote outstanding treatment for rare disease patients regardless of disease or geography, elevate collaboration, improve standards of care, advance research, and increase awareness about rare diseases in the broader medical and patient communities.

The average rare disease diagnosis can take six years and require up to 12 specialists and multiple medical tests. By designating and establishing a network of specialized centers and experts, these Centers of Excellence bring together leaders in the field from across the country to reduce the time to diagnosis and improve the availability and coordination of multi-specialty clinical care. These Centers of Excellence strive to push the rare disease field forward by collaborating to develop new care guidelines, improve medical and family education, create safe and effective referral pathways, and innovate around new treatments, therapies, and research.

NORD’s Rare Disease CoE Program is the first-ever designation program dedicated to all rare diseases and the patients impacted by them. The centers that form the NORD CoE network will work in partnership to share expertise, advance education, define standards and protocols, and shape the field of rare disease care, ultimately enabling rare disease patients to better navigate their diagnostic journey and find qualified medical homes for their complex medical conditions.