National Network of NORD Rare Disease Centers of Excellence Expands to 40 U.S. Medical Institutions

WASHINGTON, May 4, 2023 /PRNewswire/ — Today, the National Organization for Rare Disorders (NORD) announced the addition of nine new Rare Disease Centers of Excellence, bringing the total number of medical centers in this network to 40 on the day of the 40th anniversary of NORD’s founding.

The nine new NORD Rare Disease Centers of Excellence announced today include:

• Cleveland Clinic Center for Rare Diseases (Ohio)
• Michigan Medicine NORD Center of Excellence (Michigan)
• New York Center for Rare Disease (New York)
• New York-Presbyterian/Weill Cornell Rare Disease Center (New York)
• NORD Rare Disease Center for Excellence at Ann & Robert H. Lurie Children’s Hospital of Chicago and Northwestern University (Illinois)
• Stanford Medicine Children’s Health – NORD Center of Excellence for Rare Disorders (California)
• University of California, Los Angeles – NORD Center of Excellence (California)
• University of Washington SOM and Seattle Children’s Hospital NORD Rare Disease Center of Excellence (Washington)
• Yale NORD Center of Excellence for Rare Disorders (Connecticut)

NORD Rare Disease Centers Excellence expands to 40 medical institutions to help 25 million Americans with a rare disease

NORD’s Rare Disease Centers of Excellence are a unique network of medical centers, clinics, and institutions with the shared goal of advancing care and expanding access for rare disease patients. Through collaboration and knowledge sharing, the network aims to create a scalable model of treatment and research for all rare diseases that could otherwise be unattainable, providing a much-needed national infrastructure to help accelerate advancements in rare disease diagnosis, treatment, and research.

“Right now, far too many rare diseases are without an established standard of care. The Rare Disease Centers of Excellence Program will help set that standard – for patients, clinicians, and medical centers alike,” said Dr. Ed Neilan, Chief Scientific and Medical Officer for NORD.

In particular, NORD’s Program focuses on four critical goals: shortening patients’ diagnostic odysseys, improving access to the best rare disease care and the most appropriate treatments, accelerating foundational research, and facilitating faster clinical development of new therapies.

In the course of pursuing those goals, the Network is committed to advancing the diversity, equity and inclusion of historically marginalized communities. “These inequities are not only harmful to individual patients but also slow overall progress in combating rare diseases and decrease generalizability of study findings and treatment guidelines,” said Dr.Neilan.

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 from across the country, NORD is improving the availability and coordination of multi-specialty clinical care. These Rare Disease 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. 

Each Rare Disease Center of Excellence is selected by NORD in a rigorous application process requiring evidence of expert staffing across multiple specialties to meet the needs of rare disease patients as well as significant contributions to rare disease patient education, physician training, and research. Each of these Centers has demonstrated a dedication to helping train the next generation of rare disease specialists.

Located across 27 states, the full list of 40 NORD-designated Rare Disease Centers of Excellence is as follows: 

Alabama 

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

California  

• Children’s Hospital of Orange County/UC Irvine
• Stanford Medicine Children’s Health – NORD Center of Excellence for Rare Disorders
• University of California, San Francisco & UCSF Benioff Children’s Hospitals
• University of California, Los Angeles – NORD Center of Excellence

Colorado  

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

Connecticut

• Yale NORD Center of Excellence for Rare Disorders

Florida  

• University of Miami Miller School of Medicine

Georgia  

• Emory Division of Medical Genetics/Children’s Healthcare of Atlanta

Illinois

• NORD Rare Disease Center for Excellence at Ann & Robert H. Lurie Children’s Hospital of Chicago and Northwestern University

Indiana  

• Indiana University Health-Indiana University School of Medicine

Iowa  

• University of Iowa Health Care  

Maryland  

• Johns Hopkins Medicine/Kennedy Krieger Institute  

Massachusetts  

• Harvard Medical School Affiliated Hospitals – NORD Center of Excellence for Rare Disorders

Michigan            

• Michigan Medicine NORD Center of Excellence

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  

• New York Center for Rare Diseases
• Columbia University Irving Medical Center
• Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai
• New York-Presbyterian/Weill Cornell Rare Disease Center

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
• Cleveland Clinic Center for Rare Diseases

 Oklahoma  

• Oklahoma Children’s Hospital 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

• University of Washington SOM and Seattle Children’s Hospital NORD Rare Disease Center of Excellence

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 Centers of Excellence, click here.

About the National Organization for Rare Disorders (NORD)
With a 40-year history of advancing care, treatments and policy, the National Organization for Rare Disorders (NORD) is the leading and longest-standing patient advocacy group for the more than 25 million Americans living with a rare disease. NORD, a 501(c)(3) nonprofit, is dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 350 patient organization members, is committed to improving the health and well-being of people with rare diseases by driving advances in care, research and policy. For more information, please visit https://rarediseases.org/.

Rare Disease Facts and Impact:

1. It’s estimated that 25-30 million Americans have a rare disease.
   (Source: https://ncats.nih.gov/files/NCATS_RareDiseasesFactSheet.pdf)
2. Half of individuals with a rare disease are children, and of those, one in three will die before their fifth birthday.
   (Source: https://ncats.nih.gov/files/NCATS_RareDiseasesFactSheet.pdf and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6185816/)
3. Rare disease diagnosis can take five years or more and overall medical costs are three-to-five-times higher than for non-rare diseases.(Source: https://genomemedicine.biomedcentral.com/articles/10.1186/s13073-022-01026-w)
4. Patients with a rare disease incur nearly half of all healthcare costs in the U.S.
   (Source: https://www.aurorahealthcare.org/research-news/patients-with-rare-diseases-incur-nearly-half-of-all-health-care-costs-in-u.s)