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Yale site of NIH Undiagnosed Diseases Network begins accepting applications, staff warn of possible funding shortfall
Summary
Council members heard that the Undiagnosed Diseases Network (UDN) site at Yale is now accepting patient applications but that NIH funding uncertainty may limit services later this year.
Michelle Spencer Manzan, co‑chair and physician representative of the Rare Disease Advisory Council, reported that Yale recently became a site for the Undiagnosed Diseases Network (UDN), a National Institutes of Health program that evaluates patients with undiagnosed conditions most likely to have a genetic cause.
"We actually went live, this month, and we are now accepting applications," Spencer Manzan said. She explained that applicants complete the main UDN application, which is triaged to the Yale site for local review, and that no patients have been enrolled yet. "We have started getting applications, and we are reviewing them for enrollment," she added.
Spencer Manzan warned that UDN is NIH‑funded and that the network may face funding reductions across sites by late spring or early summer. "We may lose funding for some critical components," she said, noting that the situation would not be limited to Yale and that the council should expect an update on funding clarity in the coming month.
Council members encouraged outreach to clinicians and families and noted that Yale’s UDN site represents a local clinical resource for patients who meet the program criteria. The council asked Spencer Manzan to circulate application instructions and to notify the group when funding clarity is available.
The report was informational; no formal action was taken.
