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UDN Sustainability:

The Undiagnosed Diseases Network (UDN) has been an NIH Common Fund program since 2013. The goals of the network are to improve the level of diagnosis and care for rare disease or undiagnosed patients and facilitate research into undiagnosed conditions.

Since Common Fund support is limited to a maximum of 10 years, UDN investigators were charged with creating a sustainability plan to continue network operations after the NIH UDN grants end in FY2022. To help assess the UDN sustainability plan, the NIH invited 29 experts, including patient advocates, healthcare economists, and clinicians, to attend the “NIH Sustainability and Future Directions of the Undiagnosed Diseases Network” workshop, held virtually on April 6, 2020. Each expert was asked to provide feedback about the infrastructure necessary to transition the UDN to a sustainable national resource and assess plans for the transition to the post-Common Fund phase in FY2022. More information about the workshop can be found in the UDN Sustainability Workshop Report.

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This page last reviewed on September 13, 2023