NORD Expands Rare Disease Network to 49 Centers Nationwide

The newly designated centers include the Atrium Health Rare Disease Center in North Carolina, the Northwell Health/Cohen Children's Medical Center in New York, and the UC San Diego & Rady Children's Health San Diego Rare Disease Center in California. These additions bring the total network to 49 designated sites across 28 states and the District of Columbia, creating a unified system that links more than 170 academic medical centers and children’s hospitals.

Since its 2021 launch, the network has aimed to dismantle the fragmented nature of rare disease treatment. By facilitating cross-network case conferences, the program allows specialists to pool expertise on complex diagnostic challenges that often take years to resolve in isolation. According to NORD leadership, the designation process requires each facility to meet stringent benchmarks for genetic services, multidisciplinary care, and ongoing research initiatives. This collaborative model serves as a national infrastructure to accelerate patient outcomes while preparing for future therapeutic discoveries.