NORD Rare Disease Centers of Excellence – Find a Center
Improving rare disease care through expertise and collaboration
Find a Center
NORD is proud to have designated 31 Rare Disease Centers of Excellence nationwide. Each center offers the high-quality specialized care needed to help diagnose and manage complex rare diseases. Collaboration between these institutions creates critical new connections and improves access to best-in-class clinical care and resources.
List of Rare Disease Centers of Excellence by State
Alabama
- University of Alabama at Birmingham Medicine/Children’s of Alabama
Co Directors: Nathaniel H Robin, Deeann Wallis (Research Co-director)
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University of Alabama at Birmingham Medicine/Children’s of Alabama
Rare Disease Patient Appointments
Serves children and adults
Contact: Asiah Reaves Borden
Email: [email protected]
Phone: 205.934.3056
California
- University of California, San Francisco & UCSF Benioff Children’s Hospitals
Co Directors: Renata Gallagher, Anne Slavotinek - Children’s Hospital of Orange County/UC Irvine
Director: Jose E. Abdenur
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University of California, San Francisco & UCSF Benioff Children’s Hospitals
UCSF Pediatric Medical Genetics & Genomics Clinic (San Francisco)
Serves children
Phone: 415.476.2757
UCSF Pediatric Medical Genetics & Genomics Clinic (Oakland)
Serves children
Phone: 510.428.3550
UCSF Adult Genetics and Preventive Genomics Clinic
Serves adults
Phone: 415.476.2757
View contact information >
Children’s Hospital of Orange County/UC Irvine
CHOC - Metabolic Disorders (Biochemical Genetics)
Serves Children and selected adult patients
Phone: 714.509.8852
CHOC - Pediatric Genetic Services (Clinical and Molecular Genetics)
Serves Children and Adults
Phone: 714.288.3500 - Option 1
UCI - Genetics and Genomics Medicine
Serves Children and Adults
Phone: 714.456.7570
Colorado
- University of Colorado Anschutz Medical Campus/Children’s Hospital Colorado/UCHealth
Co Directors: Shawn E. McCandless, Matthew Taylor
Florida
- University of Miami Miller School of Medicine
Director: Mustafa Tekin
Georgia
- Emory Division of Medical Genetics/Children’s Healthcare of Atlanta
Director: Michael J. Gambello
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Emory Division of Medical Genetics/Children’s Healthcare of Atlanta
Emory Genetics Clinic
Serves children and adults
Phone: 404.778.8570
Indiana
- Indiana University Health-Indiana University School of Medicine
Director: Stephanie M. Ware
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Indiana University Health-Indiana University School of Medicine
Riley Children's Medical & Molecular Genetics
Serves children
Phone: 317.944.3966
IU Health Medical Genetics
Serves children and adults
Phone: 317.944.3966
IU Medicine Genetic Clinics
Serves children and adults
Phone: 317.944.3966
Iowa
- University of Iowa Health Care
Director: Hatem El-Shanti
Maryland
- Johns Hopkins Medicine/Kennedy Krieger Institute
Director: Ada Hamosh
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Johns Hopkins Medicine/Kennedy Krieger Institute
McKusick-Nathans Institute of Genetic Medicine
Serves children and adults
Phone: 410.955.3071
Kennedy Krieger Institute
Mainly serves children, but for some conditions extends to age 30.
Phone: 888.554.2080
Massachusetts
- Harvard Medical School Affiliated Hospitals – NORD Center of Excellence for Rare Disorders
Co Directors: Olaf Bodamer, David Sweetser, Richard Maas
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Harvard Medical School Affiliated Hospitals – NORD Center of Excellence for Rare Disorders
Boston Children's Genetics and Genomics
Serves children and adults
Phone: 617.355.6394
MGH Genetics and Genomics Medicine
Serves children and adults
Phone: 617.726.1561
BWH Genetics & Genomic Medicine Service
Serves adults
Phone: 855.278.8009
Minnesota
- M Health Fairview Masonic Children’s Hospital
Director: Susan A. Berry - Mayo Clinic
Co Directors: Dusica Babovic-Vuksanovic, Eva Morava-Kozicz
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M Health Fairview Masonic Children’s Hospital
Rare Diseases at M Health Fairview Masonic Children’s Hospital
Serves children and adults
Phone: 612.672.4009
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Mayo Clinic
Referring Physicians
Serves children and adults
Minnesota: 855.403.3506
Florida: 844.835.5664
Arizona: 844.249.0337
Self-referral
Serves children and adults
Minnesota: 507.538.3270
Florida: 904.953.0853
Arizona: 800.446.2279
Missouri
- Washington University/BJC Healthcare
Director: Patricia Dickson
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Washington University/BJC Healthcare
Genetics and Genomic Medicine
Serves children and adults
Phone: 314.454.6093
Nebraska
- UNMC Munroe-Meyer Institute, Omaha Children’s Hospital and Nebraska Medicine
Director: Omar Abdul-Rahman
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UNMC Munroe-Meyer Institute, Omaha Children’s Hospital and Nebraska Medicine
Genetic Medicine
Serves children and adults
Phone: 402.552.6189
New York
- Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai
Co Directors: Manisha Balwani, George A. Diaz - Columbia University Irving Medical Center
Director: Wendy Chung
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Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai
Medical Genetics and Genomics
Serves children and adults
Phone: 212.241.6947
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Columbia University Irving Medical Center
Center for Rare Disease
Serves children and adults
Phone: 212.305.5890
North Carolina
- UNC Children’s – North Carolina Children’s Hospital
Director: Cynthia M. Powel - Duke Health Rare Disease Center
Director: Priya Kishnani
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UNC Children’s – North Carolina Children’s Hospital
North Carolina Children's Hospital
Serves children
Phone: 919.966.4202
UNC Pediatrics
Serves children
Phone: 919.966.4202
UNC Health
Serves children and adults
Phone: 919.966.7890
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Duke Health Rare Disease Center
Medical Genetics
Serves children and adults
Phone: 919.684.2036
Ohio
- Nationwide Children’s Hospital/Ohio State University
Co Directors: Kim McBride, Mari Mori - Cincinnati Children’s Hospital Medical Center
Director: John Hogenesch
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Nationwide Children’s Hospital/Ohio State University
Genetics and Genomic Medicine
Serves children and adults
Phone: 614.722.3535
Request an Appointment
Serves children and adults
Phone: 800.881.7385
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Cincinnati Children’s Hospital Medical Center
Genetics and Genomics
Serves children and adults
(requires referral)
Phone: 513.636.4760
Oklahoma
- Oklahoma Children’s Hospital OU Health/University of Oklahoma Health Sciences Center
Director: Anne Tsai
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Oklahoma Children’s Hospital OU Health/University of Oklahoma Health Sciences Center
Rare Diseases for Children
Serves children and adults
Phone: 405.271.4211
Pennsylvania
- UPMC Center for Rare Disease Therapy
Co Directors: Jerry Vockley, Audrey Woerner - Penn Medicine/Children’s Hospital of Philadelphia
Director: Daniel Rader
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UPMC Center for Rare Disease Therapy
Center for Rare Disease Therapy
Serves children and adults
Phone: 412.692.7273
Division of Genetic and Genomic Medicine
Serves children and adults
View contact information >
Penn Medicine/Children’s Hospital of Philadelphia
Penn Translational Medicine and Human Genetics
Serves mainly adults but some programs include children
Phone: 215.614.0752
CHOP Division of Human Genetics
Serves children
Phone: 215.590.2920
Tennessee
- Vanderbilt University Medical Center
Director: Rizwan Hamid
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Vanderbilt University Medical Center
Pediatric Rare Disease Center
Serves children and adults
Phone: 615.322.7601
Texas
- UT Southwestern Medical Center
Director: Angela Scheuerle - McGovern Medical School
Co Directors: Hope Northrup, Myla Ashfaq, MS, CGC - Baylor College of Medicine/Baylor St. Luke’s Medical Center/Texas Children’s Hospital
Co Directors: V. Reid Sutton, Kevin Glinton
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UT Southwestern Medical Center
Pediatric Conditions
Serves children
Phone: 844.424.4537
Adult Conditions
Serves adults
Phone: 214.645.8300
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McGovern Medical School
NORD Rare Disease Center of Excellence
Serves children and adults
Phone: 713-486-RARE (7273)
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Baylor College of Medicine/Baylor St. Luke’s Medical Center/Texas Children’s Hospital
Adult Medical Genetics at Baylor Medicine
Serves adults
Phone: 713.798.7820
Texas Children's Genetics Clinic
Serves children
Phone: 832.822.4280
Utah
- University of Utah Medical Genetics
Co Directors: Lorenzo Botto, Nicola Longo
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University of Utah Medical Genetics
Division of Medical Genetics
Serves children and adults
Phone: 801.213.3599
Washington, D.C.
- Rare Disease Institute at Children’s National Hospital
Co Directors: Marshall Summar, Debra Regier
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Rare Disease Institute at Children’s National Hospital
Rare Disease Institute - Genetics and Metabolism
Serves children and adults
Phone: 202.545.2500
Wisconsin
- University of Wisconsin Center for Rare Disease
Co Directors: Kim M. Keppler-Noreuil, M. Stephen Meyn - Children’s Wisconsin/Medical College of Wisconsin
Director: Donald Basel
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University of Wisconsin Center for Rare Disease
Rare Disease Center
Serves children and adults
Phone: 608.263.5877
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Children’s Wisconsin/Medical College of Wisconsin
Undiagnosed and Rare Disease Program
Serves children and adults
Phone: 414.266.2771