Later this year, the UDNF will launch a patient and family navigation program. Undiagnosed and ultra-rare patients and families will be paired with a navigator who can support them with managing medical care, accessing social services, applying to diagnostic programs, connecting to research opportunities, matching with therapeutic options, and building community. Navigators will also facilitate consolidation of clinical, fundraising, community building, and symptom assessment strategies across undiagnosed and rare disease patient communities. Patients can receive this service at any point in their journey from symptom onset to diagnosis and beyond.
Contact us to join the wait list and receive email updates on the program launch.