HRES 385119th CongressIn Committee

Expressing support for the designation of May 2, 2025, as "NKH Awareness Day".

Introduced: May 5, 2025

Standard Summary

Comprehensive overview in 1-2 paragraphs

This is a non-binding House Resolution (H. Res. 385) introduced May 5, 2025, by Rep. Vindman (with Rep. Cline) expressing support for designating May 2, 2025 as “NKH Awareness Day.” The resolution aims to raise awareness about nonketotic hyperglycinemia (NKH), a rare genetic metabolic disorder. While it recognizes the importance of education and public understanding, the measure does not create new laws, funding, or mandatory programs. It notes that broader awareness could boost NKH research, patient registries, and diagnoses, and it provides context on NKH’s rarity and impact, including a small number of known cases and the fact that most affected individuals are children.

Key Points

1The resolution expresses support for designating May 2, 2025 as “NKH Awareness Day.”
2NKH is identified as a rare genetic metabolic disorder (glycine encephalopathy) caused by a mutation in the glycine cleavage enzyme system, leading to elevated glycine levels in the body.
3Background is provided on NKH and rare diseases: a rare disease affects fewer than 200,000 people in the U.S.; NKH affects about 1 in 76,000 people worldwide; there are roughly 500 diagnosed NKH cases globally, with 4 known patients in Virginia; NKH has severe and attenuated forms; diagnosis can involve physical exam, biochemical tests, and genetic analysis.
4The text notes that Congress can raise awareness of NKH among the public and medical community, and that increased awareness may lead to more research, greater participation in patient registries, and more diagnoses.
5The operative provisions (the actual actions) are: (1) support the designation of NKH Awareness Day; and (2) recognize the importance of raising awareness and improving education about NKH.

Impact Areas

Primary group/area affected: People living with NKH and their families, along with clinicians and researchers focused on NKH; potential growth in NKH patient registries.Secondary group/area affected: The broader rare-disease community, advocacy groups, educational and medical communities, and the state of Virginia (noted 4 known NKH patients in Virginia).Additional impacts: As a non-binding resolution, it signals legislative support and may influence awareness, funding priorities, and educational initiatives over time, but it does not authorize new programs, spending, or regulatory changes.

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