NORWELL, Mass. — The National Organization for Rare Disorders (NORD®) announced the addition of three new institutions to its prestigious NORD Rare Disease Centers of Excellence (RD CoE) Network. This strategic expansion further broadens the national network’s combined clinical and research expertise across both pediatric and adult medicine. With these latest additions, the comprehensive national network now encompasses 49 designated Rare Disease Centers of Excellence spread across 28 states and the District of Columbia. These distinguished centers maintain vital affiliations spanning more than 170 academic medical centers, research institutions, and children’s hospitals nationwide, all working in unison to transform the landscape of rare disease care.
The inclusion of premier medical institutions in California, New York, and North Carolina marks another significant milestone for the nationwide initiative, which is rapidly approaching its fifth anniversary since its inception in November 2021. The overarching goal of the network has always been to tackle the immense fragmentation that historically plagued rare disease research and patient care. By bridging institutional divides, the network successfully connects primary care clinicians, multidisciplinary specialists, and top-tier researchers under a unified national umbrella.
"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 health care infrastructure that expands what is possible for millions of people living with rare diseases."
The scale of the challenge the network seeks to address is monumental. More than 30 million Americans are currently living with one or more rare diseases, impacting families and communities across every demographic. To date, medical science has identified more than 10,000 distinct rare diseases, with an estimated 250 additional rare conditions cataloged every single year. Despite this vast number of affected individuals and conditions, clinical expertise and research opportunities have historically remained heavily fragmented. This fragmentation has long created severe roadblocks, making it exceptionally difficult for patients to find appropriate medical specialists and clinical research opportunities. Furthermore, it has hindered institutions from seamlessly sharing the vital clinical knowledge and data required to accelerate scientific discovery and improve patient outcomes.
Building What No Institution Can Build Alone
NORD launched the Rare Disease Centers of Excellence Network in late 2021 built upon a straightforward yet powerful premise: the complex, multifaceted challenges involving more than 10,000 distinct rare diseases simply cannot be effectively addressed by any single institution working entirely in isolation. As the network nears its milestone fifth anniversary, it serves as an active, living bridge connecting healthcare systems nationwide. Together, these participating entities actively strengthen patient referral pathways, share deep clinical expertise, collaborate directly on exceptionally complex patient cases, and advance cutting-edge research across institutional and geographic boundaries.
The collaborative impact of the network is already clearly visible in its daily operations. Through its specialized cross-network case conferences, the NORD Rare Disease Centers of Excellence Network has successfully reviewed and discussed nearly 90 highly complex rare disease cases. These collaborative sessions have directly engaged more than 2,000 healthcare professionals, clinical researchers, and medical trainees in shared learning, peer consultation, and cooperative problem-solving.
For individuals and families living with a rare disease, the kind of streamlined connectivity provided by the network can literally be life-changing. Navigating the healthcare system independently is often an exhausting ordeal. On average, reaching an accurate and definitive rare disease diagnosis can take anywhere from five to seven years—or sometimes even longer—frequently requiring patients to consult numerous specialists and undergo repeated, invasive testing before finding answers.
"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 Standards and Comprehensive Care Infrastructure
Achieving status as a recognized medical hub within this national network is no small feat. Each prospective NORD Rare Disease Center of Excellence must successfully navigate a highly rigorous designation process. Applicant institutions are evaluated against strict, objective benchmarks, including their capacity to provide comprehensive genetics and metabolic services, their ability to deliver coordinated pediatric and adult care across a wide spectrum of medical specialties, their active involvement in rare disease research, and their dedication to workforce training and community education.
Together, the diverse institutions comprising the network are methodically building the robust clinical and research infrastructure that is urgently required to elevate rare disease care today, while actively preparing for the breakthroughs, discoveries, and advanced treatments of tomorrow.
To learn more about the ongoing work of the NORD Rare Disease Centers of Excellence Network, including detailed eligibility requirements and to view the complete roster of designated member institutions, interested parties can visit the official NORD Rare Disease Centers of Excellence portal online.
About the National Organization for Rare Disorders
Founded in 1983, the National Organization for Rare Disorders (NORD®) stands as a prominent, independent nonprofit organization dedicated entirely to improving the health, well-being, and overall quality of life for the more than 30 million Americans who are affected by rare diseases. Operating in close partnership with more than 350 disease-specific member patient organizations alongside the 49 designated NORD Rare Disease Centers of Excellence, NORD leads national efforts to advance comprehensive clinical care, breakthrough research, public education, and patient advocacy on behalf of the entire rare disease community. Additional information and resources can be found directly through the official NORD website.
