Community Outreach and Education

The UDNF’s community outreach and education program aims to optimize the use of knowledge and evidence for decision-making by delivering findings back to the front line in a form that can be acted upon. We do this by establishing and disseminating clinical and research protocols for serving undiagnosed patients, centralizing communication for undiagnosed service providers, and serving as a universal gateway for information.

Undiagnosed and ultra-rare patients can call the UDNF to access information about research opportunities, diagnostic resources, therapeutic matching, technological developments, social services, and advocacy resources. We also network with patient advocacy organizations, community health providers, researchers, social service providers, and funders to help patients easily navigate these resources.

In addition, the program enables performance feedback and personalized professional development using routinely collected clinical data to expand the education, training, and performance of clinicians. The program provides regular clinician education about undiagnosed conditions, diagnostic pathways, and patient experiences by collaborating with professional medical organizations to provide education on rare diseases and diagnosis.