National Organization for Rare Disorders® (NORD) provides new designation to medical centers to define standards for high-quality specialized care for rare disease patients

Washington, DC, November 4, 2021— Today, the National Organization for Rare Disorders (NORD) announced 31 NORD Rare Disease Centers of Excellence across the United States, establishing a unique network of medical centers, clinics, and institutions to advance care and expand access for rare disease patients. The program is being led by NORD to promote outstanding treatment for rare disease patients regardless of disease or geography, elevate collaboration, improve standards of care, advance research, and increase awareness about rare diseases in the broader medical and patient communities.

The average rare disease diagnosis can take six years and require up to 12 specialists and multiple medical tests. By designating and establishing a network of specialized centers and experts, NORD is bringing together leaders in the field from across the country to reduce the time to diagnosis and improve the availability and coordination of multi-specialty clinical care. These Centers of Excellence will strive to push the rare disease field forward by collaborating to develop new care guidelines, improve medical and family education, create safe and effective referral pathways, and innovate around new treatments, therapies, and research. 

“Our belief is that the Center of Excellence program is the next big stride forward for rare disease treatment and patients – to improve health equity and create critical new connections to resources and specialists across our nation,” said Ed Neilan, Chief Scientific and Medical Officer, NORD. “NORD is committed to breaking down silos and building bridges so that people living with a rare disease can achieve their best health and well-being.” 

Each Center for Excellence was selected by NORD in a competitive application process requiring evidence of staffing with experts across multiple specialties to meet the needs of rare disease patients and significant contributions to rare disease patient education, physician training, and research. The NORD Rare Disease Centers of Excellence program is formulated to achieve better outcomes for all members of the rare disease community.  

The full list of NORD designated Rare Disease Centers of Excellence: 

Alabama  

• University of Alabama at Birmingham Medicine/Children’s of Alabama  

California  

• Children’s Hospital of Orange County/UC Irvine  
• University of California, San Francisco & UCSF Benioff Children’s Hospitals  

Colorado  

• University of Colorado Anschutz Medical Campus/Children’s Hospital Colorado/UCHealth 

Florida  

• University of Miami Miller School of Medicine 

Georgia  

• Emory University and Children’s Healthcare of Atlanta

Indiana  

• Indiana University Health-Indiana University School of Medicine

Iowa  

• University of Iowa Health Care  

Maryland  

• Johns Hopkins Medicine/Kennedy Krieger Institute  

Massachusetts  

• Mass General Hospital/Mass General Hospital for Children/Brigham and Women’s Hospital/Boston Children’s Hospital  

Minnesota  

• Mayo Clinic  
• M Health Fairview Masonic Children’s Hospital

Missouri  

• Washington University/BJC Healthcare  

Nebraska  

• UNMC Munroe-Meyer Institute, Omaha Children’s Hospital and Nebraska Medicine  

New York  

• Columbia University Irving Medical Center  
• Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai  

North Carolina  

• Duke Health Rare Disease Center 
• UNC Children’s – North Carolina Children’s Hospital  

Ohio  

• Cincinnati Children’s Hospital Medical Center  
• Nationwide Children’s Hospital/Ohio State University  

Oklahoma  

• OU Health/University of Oklahoma Health Sciences Center  

Pennsylvania  

• Penn Medicine/Children’s Hospital of Philadelphia  
• UPMC Center for Rare Disease Therapy  

Tennessee  

• Vanderbilt University Medical Center  

Texas  

• Baylor College of Medicine/Baylor St. Luke’s Medical Center/Texas Children’s Hospital  
• McGovern Medical School 
• UT Southwestern Medical Center  

Utah  

• University of Utah Medical Genetics  

Washington, D.C.  

• Rare Disease Institute at Children’s National Hospital  

Wisconsin  

• Children’s Wisconsin/Medical College of Wisconsin  
• University of Wisconsin Center for Rare Diseases  

NORD is looking to advance medical breakthroughs that serve individuals impacted by a rare disease. Any disease that affects fewer than 200,000 people in the United States is considered rare, according to the National Institutes of Health. There are over 7,000 rare diseases and 30 million Americans estimated to be currently living with rare diseases. More than 90% of rare diseases lack an FDA-approved treatment.  

For more information on the NORD Rare Disease Center of Excellence, click here.

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About the National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.