NORD's growing network, now 46 institutions strong, represents a coordinated nationwide effort to strengthen rare disease care and research collaboration
NORWELL, Mass., Dec. 3, 2025 /PRNewswire/ -- The National Organization for Rare Disorders (NORD®) today announced the addition of seven leading academic medical and research centers to its national NORD® Rare Disease Centers of Excellence Network, expanding collaboration to improve care and accelerate research for the more than 30 million Americans living with rare conditions.
With these new members, the network now includes 46 institutions across 28 states and Washington, D.C., working together to shorten diagnostic timelines, advance groundbreaking research, train the next generation of rare disease specialists, and close persistent gaps in equitable access to care.
"NORD is proud to welcome seven new leading institutions committed to driving breakthroughs and expanding the frontlines of rare disease care and research," said Pamela K. Gavin, NORD Chief Executive Officer. "As our network grows, we remain focused on ensuring that everyone living with a rare disease, regardless of condition or location, can receive a timely diagnosis, access expert care, and participate in cutting-edge research."
The seven new Rare Disease Centers of Excellence are:
- Cedars-Sinai Rare Disease Advocacy, Research & Excellence in Care (California)
- Children's Hospital Los Angeles & Keck NORD Center of Excellence for Rare Disorders (California)
- The New Jersey Center for Rare Disorders at Rutgers University (New Jersey)
- NYU Langone Health – NORD Rare Disease Center of Excellence (New York)
- Oregon Health & Science University Center of Excellence for Rare Diseases (Oregon)
- Rare Disease Center of Excellence at Children's Mercy Hospital and University of Kansas (Kansas)
- University of California, Davis Health Center of Excellence for Rare Disorders (California)
Uniting Expertise to Solve Complex Rare Disease Challenges
Launched in 2021, the NORD Rare Disease Centers of Excellence Network provides a national infrastructure for improving care and research across all rare diseases, accelerating progress that would otherwise be unattainable.
The average rare disease diagnosis takes five to seven years, often requiring multiple specialists, extensive testing, and significant financial resources, all while conditions progress. Even after diagnosis, patients face challenges accessing expert care and opportunities to participate in clinical trials.
"Our network is creating a system that strengthens rare disease patient care and accelerates research for all individuals with rare diseases, no matter where you live or your socioeconomic background," said Tracey Sikora, NORD Vice President of Research and Clinical Programs.
Each center undergoes NORD's rigorous designation process, meeting benchmarks for multidisciplinary staffing, patient education, physician training, and research engagement.
Academic medical and research institutions interested in joining the Network can learn more and apply at: https://rarediseases.org/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, nonpartisan, nonprofit patient advocacy organization dedicated to improving the health and lives of over 30 million Americans living with rare diseases. In partnership with more than 350 disease-specific member patient organizations, NORD drives progress in rare disease research, care, and policy.
Learn more at https://rarediseases.org/
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SOURCE National Organization for Rare Disorders (NORD®)
