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Yale UDN site accepting referrals; federal grant guidance limits some planned outreach
Summary
The Yale Undiagnosed Diseases Network (UDN) site is open and accepting patient referrals, but NIH/UDN funding guidance under review has led the site to pause expansion plans until federal instructions are clarified
The Yale Undiagnosed Diseases Network (UDN) site is accepting referrals from clinicians whose patients remain undiagnosed after exhaustive workups, but program leaders told the Rare Disease Advisory Council that some broader grant‑mandated activities are on hold pending federal guidance.
Why it matters: UDN sites provide specialized genomic and diagnostic evaluation for patients with undiagnosed conditions; changes in NIH grant direction or funding priorities could affect the scope of community engagement and some grant‑mandated activities.
What was said: Michelle Spencer Manzan, RDAC medical member, reported the Yale UDN site is active and accepting applications. She said site leaders were awaiting further clarity about new NIH/UDN grant requirements — particularly plans to expand diversity, equity and inclusion mandates in the current grant cycle — and therefore are “standing by” for guidance about some outreach and program activities. Manzan and other members said referrals for undiagnosed patients will continue to be processed.
Next steps: the UDN site will update the RDAC and the public when federal guidance is finalized. Council members asked that the UDN present further information on Rare Disease Day if the program is able to confirm planned activities.
