National Organization for Rare Disorders Expands Rare Disease Centers of Excellence Network

Additional institutions in California, New York and North Carolina strengthen a national network connecting more than 170 academic medical centers, research institutions, and children's hospitals to advance rare disease care and research nationwide

NORWELL, Mass., July 28, 2026 /PRNewswire/ -- The National Organization for Rare Disorders (NORD®) today announced three new additions to its NORD Rare Disease Centers of Excellence (RD CoE) Network, expanding the national Network's clinical and research expertise across pediatric and adult medicine. With these additions, the Network now includes 49 designated Rare Disease Centers of Excellence members 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 NORD Rare Disease Centers of Excellence:

• Atrium Health Rare Disease Center — North Carolina
  • Directors: Debra Regier, MD, PhD, and Christine Erdie-Lalena, MD, FAAP
• Northwell Health/Cohen Children's Medical Center NORD Rare Diagnosis Center of Excellence — New York
  • Director: Ian Krantz, MD
  • Associate Director: Michelle Duffe, MS, CGC
• UC San Diego & Rady Children's Health San Diego Rare Disease Center of Excellence — California
  • Director: Kristen Wigby, MD, FACMG
  • Associate Director: Amit Majithia, MD

More than 30 million Americans are living with one or more rare diseases. More than 10,000 rare diseases have been identified, and an estimated 250 additional rare conditions are identified each year. Yet clinical expertise and research remain fragmented, making it difficult for people to find appropriate specialists and research opportunities and for institutions to share the knowledge and data needed to accelerate discovery and care.

Building What No Institution Can Build Alone
NORD launched the Rare Disease Centers of Excellence Network in November 2021 around a simple premise: the challenges involving more than 10,000 rare diseases cannot be addressed by institutions working alone. As the Network nears 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.

Through its cross-network case conferences, NORD's Rare Disease Centers of Excellence Network has discussed nearly 90 complex rare disease cases, engaging more than 2,000 health care professionals, researchers, and trainees in shared learning and collaborative problem-solving. For people living with a rare disease, those 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."

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.

To learn more about the NORD Rare Disease Centers of Excellence Network, including eligibility requirements and the full list of designated NORD RD CoE, visit NORD Rare Disease Centers of Excellence.

About the National Organization for Rare Disorders

Founded in 1983, the National Organization for Rare Disorders (NORD®) is a leading independent nonprofit organization dedicated to improving the health and lives of more than 30 million Americans with rare diseases. In partnership with more than 350 disease-specific member patient organizations and 49 designated NORD Rare Disease Centers of Excellence, NORD advances care, research, education, and advocacy on behalf of the rare disease community. Learn more at NORD.

SOURCE National Organization for Rare Disorders (NORD®)