NORD Rare Disease Centers Of Excellence 

The National Organization for Rare Disorders (NORD) has established a unique network of medical centers, clinics, and institutions to advance care and expand access for rare disease patients. The centers 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, these Centers of Excellence bring 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 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.

NORD’s Rare Disease CoE Program is the first-ever designation program dedicated to all rare diseases and the patients impacted by them. The centers that form the NORD CoE network will work in partnership to share expertise, advance education, define standards and protocols, and shape the field of rare disease care, ultimately enabling rare disease patients to better navigate their diagnostic journey and find qualified medical homes for their complex medical conditions.

 

List of Rare Disease Centers of Excellence by State

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 Division of Medical Genetics

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 Disease