NORD adds 7 sites in 5 states as Rare Disease Centers of Excellence
Effort aims to strengthen care in US for conditions like AADC deficiency
In a major effort to strengthen rare disease care and research collaboration across the U.S., the National Organization for Rare Disorders (NORD) announced it is expanding its Rare Disease Centers of Excellence Network by welcoming seven additional academic medical and research centers in five states.
With these new sites, the network now numbers 46 centers in 28 states and Washington, D.C. According to NORD, these Centers of Excellence provide a coordinated national system designed to shorten diagnostic delays, drive innovative research, train the next generation of specialists, and widen access to expert care.
“NORD is proud to welcome seven new leading institutions committed to driving breakthroughs and expanding the frontlines of rare disease care and research,” Pamela K. Gavin, NORD’s CEO, said in a press release from the nonprofit.
“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,” Gavin said.
On average, diagnosing rare diseases, such as aromatic l-amino acid decarboxylase (AADC) deficiency, takes five to seven years, often requiring multiple specialists, extensive testing, and significant financial resources — frequently while a patient’s symptoms worsen. Even after receiving a diagnosis, many individuals with rare diseases continue to encounter barriers in accessing expert care and finding opportunities to participate in clinical research.
With new Centers of Excellence, US total stands at 46
Established in 2021, the NORD Rare Disease Centers of Excellence initiative was designed to create a national framework that connects institutions excelling in clinical and research programs for rare diseases. Its goal is to accelerate efforts to innovate and advance care and research across these conditions.
This effort aligns with NORD’s mission to improve the lives of people with rare diseases by advancing practical, meaningful, and lasting change that elevates care, supports research, and informs policy.
The seven new Rare Disease Centers of Excellence include three in California:
- Cedars-Sinai Rare Disease Advocacy, Research & Excellence in Care
- Children’s Hospital Los Angeles & Keck NORD Center of Excellence for Rare Disorders
- University of California, Davis Health Center of Excellence for Rare Disorders
The other four new centers are located across the U.S.:
- Rare Disease Center of Excellence at Children’s Mercy Hospital and the University of Kansas
- The New Jersey Center for Rare Disorders at Rutgers University
- NYU Langone Health – NORD Rare Disease Center of Excellence
- Oregon Health & Science University Center of Excellence for Rare Diseases
All centers participating in the program undergo a rigorous NORD designation process, which evaluates their adherence to established standards for multidisciplinary staffing, patient education, clinician training, and engagement in research activities, the nonprofit noted.
“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, vice president of research and clinical programs at NORD.
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