NORD Names 31 Rare Disease Centers of Excellence

The National Organization for Rare Disorders named 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.

Photo: Ed Neilan, chief scientific and medical officer for NORD.

These Centers of Excellence are expected 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 for NORD.

Each NORD Center for Excellence was selected through 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.

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

•             Children’s Hospital of Orange County/UC Irvine 

•             University of California, San Francisco and 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 

Author: Rare Daily Staff