Washington University/BJC Healthcare joins new NORD Rare Disease Centers of Excellence Network, committed to improving access and care for rare disease patients

We are proud to have a 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 and advance care and research for rare disease patients in the United States. The program is being led by the National Organization for Rare Disorders NORD®, with a goal to foster knowledge sharing between experts across the country, connect patients to appropriate specialists regardless of disease or geography, and to improve the pace of progress in rare disease diagnosis, treatment, and research.

Our Center provides clinical diagnosis and care for adults, children, and families with rare diseases (defined as <200,000 individuals in the United States). Washington University/BJC Healthcare is recognized as a leader in many areas of rare disease. Below is a list of some of our other designations relevant to rare disease:

In addition, St. Louis Children’s Hospital is an OptumHealth Pediatric Transplant Center of Excellence for:

  • Blood/Marrow
  • Heart
  • Heart/Lung
  • Kidney
  • Kidney/Liver
  • Liver
  • Lung

Barnes Jewish Hospital is an OptumHealth Transplant Center of Excellence for:

  • Blood/Marrow
  • Heart
  • Heart/Lung
  • Kidney
  • Kidney/Liver
  • Kidney/Pancreas
  • Liver
  • Lung
  • Pancreas

We have specialty clinics for Down syndrome, Cantu syndrome, Williams syndrome, Wolfram syndrome, spinal muscular atrophy, 22q11.2 syndrome, neurofibromatosis, Adult Mendelian Lipid Disorders, and CDKL5 among others.

Nurse navigator

For questions or further assistance, please contact us.

NORD, the NORD logo and tagline are registered trademarks of the National Organization for Rare Disorders. NORD is a registered 501(c)(3) charity organization