Edward Neilan, MD, PhD, Chief Scientific and Medical Officer at the National Organization for Rare Disorders (NORD), discusses the organization’s recently established Rare Disease Centers of Excellence.

As Dr. Neilan explains, there were two main goals when establishing a national network of rare disease centers. The first goal was to help rare disease patients find medical centers that have deep and broad expertise and could assist them with their diagnosis or treatment of their disease. The second goal was to enable rare disease experts to work collaboratively, which will hopefully lead to faster progress in terms of diagnoses, treatments, and development of guidelines and new therapies.  

The application process for the NORD Rare Disease Centers of Excellence was extensive to ensure that each center, among other things, had extensive expertise. Some additional criteria for the selection of these centers included being actively involved in rare disease research, actively training the “next generation” of rare disease clinicians and researchers, and being able to provide care for all ages and assist with the transition for pediatric to adult care. NORD also evaluated if centers were providing education about rare diseases to the public and reaching out to underserved minorities.

Dr. Neilan hopes that by establishing this network of centers, it will increase the sharing of information between physicians, which will in turn decrease the need for patients to travel across the country to receive proper care for their rare disease.

The current institutions included in the network are:

  • University of Alabama at Birmingham Medicine/Children’s of Alabama  
  • Children’s Hospital of Orange County/UC Irvine  
  • University of California, San Francisco & UCSF Benioff Children’s Hospitals  
  • University of Colorado Anschutz Medical Campus/Children’s Hospital Colorado/UCHealth 
  • University of Miami Miller School of Medicine 
  • Emory University and Children’s Healthcare of Atlanta
  • Indiana University Health-Indiana University School of Medicine
  • University of Iowa Health Care  
  • Johns Hopkins Medicine/Kennedy Krieger Institute    
  • Mass General Hospital/Mass General Hospital for Children/Brigham and Women’s Hospital/Boston Children’s Hospital   
  • Mayo Clinic  
  • M Health Fairview Masonic Children’s Hospital 
  • Washington University/BJC Healthcare  
  • UNMC Munroe-Meyer Institute, Omaha Children’s Hospital and Nebraska Medicine  
  • Columbia University Irving Medical Center  
  • Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai  
  • Duke Health Rare Disease Center 
  • UNC Children’s – North Carolina Children’s Hospital  
  • Cincinnati Children’s Hospital Medical Center  
  • Nationwide Children’s Hospital/Ohio State University  
  • OU Health/University of Oklahoma Health Sciences Center   
  • Penn Medicine/Children’s Hospital of Philadelphia  
  • UPMC Center for Rare Disease Therapy  
  • Vanderbilt University Medical Center  
  • Baylor College of Medicine/Baylor St. Luke’s Medical Center/Texas Children’s Hospital  
  • McGovern Medical School 
  • UT Southwestern Medical Center   
  • University of Utah Medical Genetics  
  • Rare Disease Institute at Children’s National Hospital  
  • Children’s Wisconsin/Medical College of Wisconsin  
  • University of Wisconsin Center for Rare Diseases  


To learn more about the Centers of Excellence, click here.

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