NORD Rare Disease Center of Excellence

Pediatrician with patient

NORD Center of Excellence badge

McGovern Medical School has announced its designation as a NORD Rare Disease Center of Excellence, joining a highly select group of 31 medical centers nationwide as part of an innovative network seeking to expand access, advance care, and research for rare disease patients in the U.S.

The NORD Rare Disease Centers of Excellence program is formulated to achieve better outcomes for all members of the rare disease community. This collaborative partnership strives to push the rare disease field forward by establishing and implementing new standards of care and innovating new treatments, therapies, and research. According to the National Institutes of Health, any disease that affects fewer than 200,000 people in the U.S. is considered rare. There are over 7,000 rare diseases, and 25-30 million Americans are estimated to be currently living with rare diseases.

More about the National Organization of Rare Diseases and its Centers of Excellence program is available here.

NORD logo that says Alone we are rare but together we are strong

Center of Excellence Clinics

Tuberous Sclerosis Complex (TSC) Center of Excellence

The TSC Center of Excellence provides cutting-edge, multidisciplinary medical care to children and adults with TCS. The TSC CoE also performs both clinical and basic science research on TSC and educates medical professionals and the public about its effects.

UTHealth Vascular Anomalies Clinic

The Vascular Anomalies Clinic provides state-of-the-art evaluation and treatment for rare conditions that affect the lymphatic and blood vessels of any part of the body through multidisciplinary care.

Center for the Treatment of Pediatric Neurodegenerative Disease (CTPND)

CTPND provides multidisciplinary care for children with neurodegenerative diseases, such as mitochondrial disease, ataxia telangiectasia, pediatric Huntington’s disease, leukodystrophies, and others.

Glycogen Storage Diseases (GSD) Center of Excellence

The GSD Center of Excellence provides a comprehensive approach for diagnosis, management and long-term follow-up of children and adults with glycogen storage diseases.

Lysosomal Storage Disease Clinic

The LSD Center of Excellence offers diagnosis, evaluation, management, and treatment services for children and adults with all types of LSDs.

Gulf States Hemophilia and Thrombophilia Center (GSHTC)

Gulf States Hemophilia & Thrombophilia Center provides comprehensive, multidisciplinary care to individuals with Hemophilia, von Willebrand disease, and other rare coagulation disorders.

Lymphangioleimyomatosis (LAM) Center of Excellence

The LAM CoE clinic provides care for individual with diffuse pulmonary cystic diseases and rare lung diseases and participates in local and national research initiatives.

UTHealth Spina Bifida Clinic

The UTHealth Spina Bifida clinic provides multidisciplinary care to create a comprehensive treatment plan for children with neural tube defects.

Texas Cleft-Craniofacial

Texas Cleft-Craniofacial Team provides comprehensive, multidisciplinary care for children and adults with craniofacial conditions.

Children’s Heart Institute

The Children’s Heart Institute at Children’s Memorial Hermann Hospital provides comprehensive, multidisciplinary care for patients with congenital heart defects.

Medical Genetics Clinic

The Medical Genetics clinic provides diagnostic evaluation, clinical management, and genetic counseling for children and adults with known or suspected genetic disorders, such as, inborn errors of metabolism, skeletal dysplasias, autism, birth defects, and intellectual disability.

UTHealth Neurosciences Huntington Disease (HD) clinic

The HD clinic provides multidisciplinary, state-of-the-art care in evaluating and treating individuals with HD, as well as genetic testing services and research opportunities.

UTHealth CHOSEN Clinic

The CHOSEN clinic provides care and case management for children and young adults with rare genetic and neurological disorders, such as cerebral palsy, brain or spinal cord injury, chronic lung disease, congenital heart disease, genetic syndromes, and other chronic illnesses.

UT High Risk Children’s Clinic/Complex Care Program

The High Risk Children’s clinic provides care for children with rare disorders that affect multiple organ systems, require subspecialist care, and have a need for medical technology, such as primary ciliary dyskinesia, congenital diaphragmatic hernia, and cystic fibrosis. Our clinic recently became a post-COVID-19 Center of Excellence.

Metabolic Clinical Trials Unit

The Metabolic Clinical Trials Unit through the Division of Medical Genetics specializes in gene therapy, enzyme replacement, and enzyme substitution trials, and is a site for registries and natural history studies. We currently offer studies for individuals with PKU, GSD-Ia, GSD-III, X-linked hypophosphatemia, Morquio A syndrome, & LAL D.

Contact Us

If you or a family member may have a rare disease and have struggled to find a diagnosis, or have recently been diagnosed with a rare disease, contact our expert care team to request an appointment or learn more about our approach to care.

Contact hours:
Monday – Friday: 7 am – 5 pm