Washington University/BJC Healthcare joins the 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 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.

Specialty resource list

Provided below is a collection of Washington University/Barnes Jewish Healthcare (BJH and SLCH) resources by condition. Please use the search field to filter results. If you are unable to find what you are looking for, feel free to reach out to us to be directed appropriately.


For questions or further assistance, please contact us.

Michelle Oliva, RN, MSN

Michelle Oliva, RN, MSN

Nurse Navigator

Michelle Oliva is the Rare Disease Nurse Navigator for the Division of Genetics & Genomic Medicine at Department of Pediatrics, where she supports Washington University and Barnes Jewish Hospitals NORD CoE designation. She serves as a member of the NORD Diversity, Equity, and Inclusion working group. She leverages her expertise in rare guidance care and problem-solving abilities to offer help and hope for families. As a nurse navigator, she advocates for patients and participates in NORD meetings with an aim to incorporate NORD CoE initiatives. She has established relationships that work closely with local, state and national organizations focused on collaboration, education and advocacy for rare disorders. She participated as a CoE panelist at the NORD Summit and Missouri Cures in October 2024. Michelle has been a pediatric nurse since 2001 with previous positions in clinic management and clinical coordination with a specialty in epilepsy management of the ketogenic diet and inpatient care. She was formerly a certified pediatric nurse for over ten years and a member of the American Association of Neuroscience Nurses.

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

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