CENTERS OF EXCELLENCE

Committing to Care, Access, Equity, and Research: NORD Announces 31 Rare Disease Centers of Excellence 

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/UC Health

FLORIDA

  • University of Miami Miller School of Medicine

GEORGIA

  • Emory Division of Medical Genetics

INDIANA

  • Indiana University Health

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-University of Minnesota 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, DC

  • 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.

Source: National Organization for Rare Diseases http://www.rarediseases.org