Patient Navigation Program

The Patient Navigation program will support patients both within the clinical sites of the Undiagnosed Diseases Network and the broader community beginning with Baylor College of Medicine and Washington University Medical Center in St. Louis. People currently living with or caring for those with an undiagnosed or ultra-rare disease nationwide are urged to apply on the UDNF website as the program continues to expand to new sites throughout the country:

The Patient Navigation program was made possible by a generous $2.5 million grant from the Chan Zuckerberg Initiative (CZI). The grant aligns with CZI’s health equity mission and UDNF’s prioritization of addressing disparities in the access to care.

We understand how alone you can feel when you are looking for answers, but you are never alone.   If you have questions or concerns,  our  patient navigators are here to help you.   From general questions about life with an undiagnosed or ultra-rare disease, to connecting with resources, or helping you through the UDN process, we are here for you.  PLEASE NOTE:  Consent and surveys are used to protect your health information and provide resources.   ATTENTION:  If you are having new symptoms or need urgent care, please contact your local provider or call 911.  The navigators do not provide medical advice.

To Connect with a Patient Navigator, please fill out the form below. 

If you have general questions, please email