NORD Rare Disease Centers of Excellence
World-Class Expertise
Working Together to Reimagine the Future of Rare Disease Patient Care & Research
Every person who has a rare disease deserves the best possible care and support. NORD® Rare Disease Centers of Excellence are working together to make this vision a reality.
Each NORD Rare Disease Center of Excellence offers world-class doctors in all major specialties and brings together medical teams experienced in diagnosing and treating a wide array of rare diseases. In addition, researchers at each Rare Disease Center of Excellence are working with doctors and patients to find more treatments and cures for rare diseases. NORD is interconnecting this Network of major academic medical and research institutions to encourage collaboration and sharing of best practices and expertise.
Together, NORD® Rare Disease Centers of Excellence are diagnosing and treating thousands of rare disease patients and are at the cutting edge of some of the biggest medical and scientific breakthroughs.
For Patients & CaregiversDiscover how to find a Rare Disease Center of Excellence and other information by visiting our Patient & Caregiver FAQs >
About the Network
Launched in November 2021, the NORD Rare Disease Centers of Excellence Network is the first national network of U.S. hospitals and academic medical and research institutions dedicated to diagnosing, treating and researching all rare diseases.
The Network is modeled after care and research networks focused on a single rare disease or a small group of rare diseases. These networks have led to improved care, new treatments, and better lives for their patients and families. NORD formed the Rare Disease Centers of Excellence Network because we believe all rare disease patients and families deserve the benefits provided by these networks.
The academic medical and research institutions participating in our Network are committed to sharing knowledge and best practices to improve rare disease care and advance rare disease research. Together, our Rare Disease Centers of Excellence are committed to solving the greatest medical challenges and unmet needs of the rare disease patient community.
Shorten Time to Diagnosis
Improve Quality & Access Care
Accelerate Research to Develop New Treatments
Increase the Number of Multi-Site Clinical Trials
Train More Rare Disease Specialists
How it Works
The 46 NORD Rare Disease Centers of Excellence are based in 28 states and the District of Columbia. All NORD Rare Disease Centers of Excellence consist of multiple academic medical and research institutions and many have outreach clinics across their state. Several of the NORD Rare Disease Centers of Excellence routinely provide care to rare disease patients in nearby states.
If you have questions about your care or the care of a loved one or are struggling to get a diagnosis, talk to your doctor or the doctor of your loved one about being seen by a specialist at a NORD Rare Disease Center of Excellence.
To learn more about how to be seen at a NORD Rare Disease Center of Excellence, please see our:
Frequently Asked Questions
NORD® Rare Disease Centers of Excellence Working Groups bring together rare disease clinicians, researchers, genetic counselors, allied health professionals, and support staff across the Network to solve shared challenges. More than 350 volunteers representing 25+ specialties collaborate through these groups to improve diagnosis, care, education, research, and policy for people living with rare diseases.
Below are projects completed by the Working Groups to date, with additional initiatives underway.
Telemedicine Resources for Patients & Caregivers
Practical tips and tools to help patients and caregivers prepare for telemedicine visits and follow up after the appointment.
Disponible en español:
Recursos de telemedicina para pacientes y cuidadores
Recursos de telemedicina para pacientes y cuidadores
Telemedicine Resources for Medical Professionals
Guidance for clinicians on delivering telemedicine care, with resources that can also be shared with patients and families.
RareDx Series
Plain-language guides and clinical primers developed by NORD Rare Disease Centers of Excellence to support earlier recognition, diagnosis, and care for rare disease.
(Pediatric versions available now; adult versions coming soon.)
Introduction to Rare Diseases (Online Student Course)
A self-paced online course featuring expert lectures from the NORD Rare Disease Centers of Excellence, with a Certificate of Completion.
How to Advocate for Rare Disease-Related Policies
A practical advocacy guide to help clinicians, researchers, and rare disease professionals support policy change at the local, state, and federal level.
Publication: Institutional Readiness for Novel Therapeutics (2025)
A peer-reviewed framework to help healthcare institutions prepare for the safe and coordinated delivery of emerging rare disease therapies.
Donations & Partnerships
Improving access to diagnosis and care, developing new standards of care, and finding treatments and cures for more than 10,000 rare diseases is no small task.
We can’t do it alone. The NORD Rare Disease Centers of Excellence Network seeks financial support from individuals and organizations across all sectors and industries to fund transformative work that will benefit millions of people now and in the future.
Partner With Us Today. To learn how you can be a partner in “Reimagining the Future of Rare Disease Patient Care & Research” contact NORD using the online form or call 617.934.6397
Did You Know:
- Nearly 1 in 10 Americans suffer from a rare disease, equating to more than 30 million people.
- Half of rare disease patients are children and 30% will not live to see their fifth birthday.
- Being diagnosed with a rare disease can take 5 to 10 years or more in comparison to days, weeks or months for other diseases like cancer, heart disease, or diabetes.
- The U.S. spends $400B in medical expenses for rare disease – higher than the individual costs of cancer, heart disease or obesity.
Baylor College of Medicine/Baylor St. Luke’s Medical Center/Texas Children’s Hospital
Located in:
- Texas
Cedars-Sinai Rare Disease Advocacy, Research & Excellence in Care (CS RARE)
Located in:
- California
Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai
Located in:
- New York
