NORD’s Network Expansion: A New Strategy for Rare Disease Care

NORWELL, MA – December 03, 2025 – For the more than 30 million Americans living with a rare disease, the path to a diagnosis is often a grueling, years-long odyssey. But a strategic expansion of a national network of elite medical institutions aims to change that narrative. The National Organization for Rare Disorders (NORD®) today announced the addition of seven new Rare Disease Centers of Excellence, strengthening a nationwide effort to accelerate research and improve care for a patient population that has long navigated a fragmented healthcare landscape.

With the inclusion of these leading academic medical centers, the NORD network now comprises 46 institutions across 28 states and Washington, D.C. This expansion represents a significant step in building a robust national infrastructure designed to dismantle the systemic barriers faced by rare disease patients. The core mission is to shrink the torturous five-to-seven-year average diagnostic timeline, provide access to multidisciplinary expert care, and create new opportunities for patients to participate in groundbreaking research.

“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, in a statement. “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.”

A Lifeline Through the Diagnostic Odyssey

The designation of a NORD Rare Disease Center of Excellence is not a ceremonial title; it is the result of a rigorous vetting process that ensures each institution meets a high standard of care. To earn this three-year certification, centers must demonstrate deep expertise across multiple medical specialties, a strong commitment to physician training, and significant contributions to both patient education and rare disease research. Applicants face an exhaustive review, answering over 100 questions to verify their capacity to provide comprehensive, on-site services, from advanced imaging to immunological consultations.

This meticulous process is designed to create reliable hubs for patients who have often been bounced between specialists with no conclusive answers. By establishing and certifying these centers, NORD provides a clear, trustworthy roadmap for patients and their primary physicians. The network's structure fosters a collaborative environment where information and expertise are shared, potentially reducing the need for families to crisscross the country in a desperate search for specialists who understand their condition. The ultimate goal is to create a system where a patient’s journey from symptom to diagnosis and treatment is measured in months, not years.

The newly designated centers include California's Cedars-Sinai, Children's Hospital Los Angeles & Keck NORD Center of Excellence for Rare Disorders, and the University of California, Davis Health; The New Jersey Center for Rare Disorders at Rutgers University; NYU Langone Health in New York; Oregon Health & Science University; and a joint center at Children's Mercy Hospital and the University of Kansas.

Building a Collaborative Research Engine

Beyond improving individual patient care, the NORD network functions as a powerful, collaborative research engine. By linking 46 of the nation’s top academic medical centers, the program breaks down the institutional silos that can slow scientific progress. This interconnected infrastructure is crucial for tackling the complexities of over 7,000 known rare diseases, many of which affect only a few hundred people worldwide.

“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,” explained Tracey Sikora, NORD Vice President of Research and Clinical Programs. This collaborative framework allows for the pooling of patient data, the development of standardized care guidelines, and the rapid dissemination of new research findings.

This strategy is also a pragmatic response to the challenging funding environment for rare diseases. While government bodies like the NIH and FDA provide grants, and patient advocacy groups contribute crucial seed funding, the small patient populations for individual diseases often make them a low priority for major pharmaceutical investment. A coordinated network like NORD’s makes clinical trials more feasible by providing access to a larger, more organized patient pool. It de-risks investment and creates a more attractive ecosystem for public-private partnerships, ultimately accelerating the development of novel therapies where they are desperately needed.

Confronting the Geography of Care

While the expansion to 46 centers marks significant progress, a map of the network also reveals the persistent challenge of health equity in the United States. With institutions now in 28 states and the District of Columbia, NORD is making a concerted effort to distribute expertise more evenly across the country. The addition of a center at Rutgers University, for example, brings a much-needed hub to New Jersey.

However, this still leaves 22 states—including large swaths of the Mountain West, the Deep South, and New England—without a designated Center of Excellence. Patients in states like Montana, Mississippi, Nevada, or Maine still face the daunting prospect of significant travel and expense to access the specialized care offered by the network. This geographic disparity underscores the reality that for many, access to cutting-edge medicine remains dictated by zip code.

The strategic growth of the NORD network is a direct acknowledgment of this problem. Each new center serves as another node in a growing safety net, extending a lifeline to patients in previously underserved regions. The expansion is an incremental but vital step toward fulfilling the organization's promise of equitable access. As the network continues to mature, its success will be measured not only by the scientific breakthroughs it fosters but also by its ability to close these geographic gaps, ensuring that a rare disease diagnosis does not come with an additional sentence of isolation and insurmountable logistical hurdles.