NORD Expands Rare Disease Centers of Excellence Network with Three New Institutions
Key Insights
The National Organization for Rare Disorders (search) (NORD) added three new institutions to its Rare Disease Centers of Excellence Network, bringing the total to 49 designated centers across 28 states and the District of Columbia.
Newly designated centers include Atrium Health in North Carolina, Northwell Health/Cohen Children's Medical Center (search) in New York, and UC San Diego & Rady Children's Health in California.
The Network now connects more than 170 academic medical centers, research institutions, and children's hospitals, facilitating cross-institutional collaboration on complex rare disease cases.
The National Organization for Rare Disorders (search) (NORD) announced on July 28, 2026, the addition of three new institutions to its Rare Disease Centers of Excellence (RD CoE) Network, further strengthening a national infrastructure designed to advance rare disease care and research. The expansion brings the Network to 49 designated Rare Disease Centers of Excellence across 28 states and the District of Columbia, with affiliations spanning more than 170 academic medical centers, research institutions, and children's hospitals nationwide.
"We're proud to welcome these newly designated Rare Disease Centers of Excellence, whose clinical expertise, research strength, and commitment to collaboration will strengthen this national network," said Pamela Gavin, NORD Chief Executive Officer. "By connecting leading institutions across the country, the NORD Rare Disease Centers of Excellence Network transforms individual organizational expertise into a shared national healthcare infrastructure that expands what is possible for millions of people living with rare diseases."
Newly Designated Centers
The three newly designated centers are Atrium Health Rare Disease Center (search) in North Carolina, directed by Debra Regier, MD, PhD, and Christine Erdie-Lalena, MD, FAAP; Northwell Health/Cohen Children's Medical Center (search) NORD Rare Diagnosis Center of Excellence in New York, directed by Ian Krantz, MD, with Associate Director Michelle Duffe, MS, CGC; and UC San Diego & Rady Children's Health San Diego (search) Rare Disease Center of Excellence in California, directed by Kristen Wigby, MD, FACMG, with Associate Director Amit Majithia, MD.
Addressing a Fragmented Care Landscape
More than 30 million Americans are living with one or more rare diseases. Over 10,000 rare diseases have been identified, and an estimated 250 additional rare conditions are identified each year. Despite this substantial disease burden, clinical expertise and research remain fragmented, making it difficult for patients to find appropriate specialists and research opportunities, and for institutions to share the knowledge and data needed to accelerate discovery and care.
NORD launched the Rare Disease Centers of Excellence Network in November 2021, grounded in the premise that the challenges posed by more than 10,000 rare diseases cannot be addressed by institutions working alone. As the Network approaches its fifth anniversary, it connects primary care clinicians, specialists across a broad range of disciplines, researchers, and multidisciplinary teams from leading health systems nationwide. Together, they strengthen referral pathways, share clinical expertise, collaborate on complex cases, and advance research across institutional and geographic boundaries.
Collaborative Impact and Clinical Reach
Through its cross-network case conferences, the Network has discussed nearly 90 complex rare disease cases, engaging more than 2,000 healthcare professionals, researchers, and trainees in shared learning and collaborative problem-solving. For individuals living with a rare disease, these connections can be critical: reaching an accurate diagnosis may take five to seven years or longer and involve numerous specialists and repeated testing.
"Designation as a NORD Rare Disease Center of Excellence reflects more than clinical expertise," said Marybeth McAfee, NORD Vice President of Community and Medical Affairs. "It represents a commitment to collaboration, continuous learning, and advancing rare disease care beyond the walls of a single institution. As this network grows, so does its ability to accelerate learning and improve care for people across the country."
Rigorous Designation Standards
Each NORD Rare Disease Center of Excellence undergoes a rigorous designation process, meeting benchmarks for comprehensive genetics and metabolic services, coordinated pediatric and adult care across specialties, rare disease research, workforce training, and community education. Together, the Network is building the clinical and research infrastructure needed to improve rare disease care today and prepare for the discoveries and treatments of tomorrow.
Founded in 1983, NORD is a leading independent nonprofit organization dedicated to improving the health and lives of more than 30 million Americans with rare diseases, working in partnership with more than 350 disease-specific member patient organizations and the 49 designated NORD Rare Disease Centers of Excellence.