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NORD Expands Its Network with Seven New Centers for Rare Diseases

In a significant advancement for rare disease care, the National Organization for Rare Disorders (NORD) has welcomed seven new institutions into its Rare Disease Centers of Excellence Network, bringing the total to 46 centers across 28 states and Washington, D.C. This expansion aims to address the complex challenges faced by more than 30 million Americans living with rare conditions.

A Coordinated Effort to Transform Care

Founded in 1983, NORD serves as a pioneering nonprofit patient advocacy group dedicated to improving the lives of those affected by rare diseases. The organization has been at the forefront of advocating for patients and families, bridging the gap between healthcare resources and individuals facing the daunting realities of rare disorders.

The newly added centers 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)

These institutions will contribute to a national infrastructure that not only enhances care but also accelerates research, aiming to shorten the time it takes for patients to receive a diagnosis. Currently, the average time for diagnosing a rare disease spans five to seven years, often involving multiple specialists and extensive testing.

Driving Breakthroughs in Research and Care

Pamela K. Gavin, CEO of NORD, emphasized the organization’s commitment to driving progress in rare disease treatment and research. “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,” she stated.

Tracey Sikora, NORD’s Vice President of Research and Clinical Programs, highlighted the importance of the network in strengthening patient care and facilitating research opportunities. She noted that, historically, patients have faced considerable barriers in accessing the specialized care they need, particularly when participating in clinical trials.

“To make meaningful advancements, our network is designed to create a system that strengthens rare disease patient care and accelerates research for individuals with rare diseases, regardless of their backgrounds,” Sikora explained.

Rigorous Standards for Excellence

The new centers underwent a stringent evaluation process to secure their designation, ensuring they meet comprehensive benchmarks in multidisciplinary staffing, patient education, and active physician training, alongside robust engagement in research.

Academic medical and research institutions interested in joining this mission can find more information about the NORD's network and application process at NORD's website.

Conclusion

As this formidable network continues to expand, it offers hope and strategic support to those grappling with rare diseases. Through collaboration, knowledge-sharing, and innovative research, NORD and its partners are paving the way for a brighter future for millions of Americans living with rare conditions. The journey toward improved diagnosis, treatment, and care for rare diseases is an ongoing battle, but with dedicated centers like these, the landscape is transforming for the better.