Sponsors (6)
The bill increases attention, capacity, and research support for diagnosing rare and undiagnosed conditions—potentially improving care for affected patients—while raising privacy risks, equity concerns around access, and modest additional federal spending.
Patients with rare or undiagnosed conditions would gain greater recognition and faster access to evaluations and diagnoses as UDN capacity and access are supported through 2027, helping more people receive appropriate care.
Hospitals, clinicians, and the public would benefit from promoted medical education and awareness that can reduce diagnostic delays and improve equitable use of genomic technologies.
Supporting the UDN’s use of genomic sequencing, model organisms, and AI fosters continued investment in cutting-edge diagnostics and biomedical research that could drive future therapies and health-sector innovation.
Patients whose data are used by the UDN would face increased privacy and data-security risks from expanded genomic sequencing and AI tools unless strong protections are implemented.
Underserved communities (rural, low-income) may not gain equal access to genomic and AI diagnostics, so the emphasis on these technologies could widen existing disparities despite stated expansion goals.
Expanding UDN capacity and supporting genomic diagnostics could increase federal research spending and impose additional costs on taxpayers.
Based on analysis of 1 section of legislative text.
Recognizes the burden of undiagnosed disease, highlights the NIH Undiagnosed Diseases Network, designates April as Undiagnosed Awareness Month and April 29 as Undiagnosed Day, and urges greater awareness, education, and equitable access to diagnostic tools.
Official title: Expressing support for the designation of Undiagnosed Awareness Month.
Introduced April 28, 2026 by Mark Pocan · Last progress April 28, 2026
Recognizes the large number of Americans living with rare and undiagnosed diseases, highlights the role and growth of the NIH Undiagnosed Diseases Network (UDN) and its supporting nonprofit, and designates April as Undiagnosed Awareness Month and April 29 as Undiagnosed Day. It calls for greater public awareness, improved medical education, equitable access to genomic and diagnostic technologies, and notes NIH plans to expand UDN capacity and access by 2027.