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

Bill: 119-hres-385
Sponsor: full_name: Rep. Vindman, Eugene Simon [D-VA-7]
Introduced: 2025-05-05
Policy area: Health
Latest action: action_date: 2025-05-05
text: Referred to the House Committee on Energy and Commerce.

Summaries:

tv_txt: IV 119th CONGRESS 1st Session H. RES. 385 IN THE HOUSE OF REPRESENTATIVES May 5, 2025 Mr. Vindman (for himself and Mr. Cline ) submitted the following resolution; which was referred to the Committee on Energy and Commerce RESOLUTION Expressing support for the designation of May 2, 2025, as NKH Awareness Day .

Whereas a rare disease is defined as a disease that affects fewer than 200,000 people in the United States at any given time; Whereas children make up more than half of the estimated 25,000,000 to 35,000,000 people in the United States living with a rare disease; Whereas nonketotic hyperglycinemia (NKH) is a rare genetic metabolic disorder in which abnormally high levels of glycine build up in a patient’s body; Whereas NKH is also known as glycine encephalopathy; Whereas NKH affects approximately 1 in 76,000 people worldwide; Whereas NKH is caused by a mutation in the glycine cleavage enzyme system, meaning that patients cannot break down glycine, resulting in its accumulation throughout the body and especially in the spinal cord and brain; Whereas NKH has 2 forms, severe and attenuated NKH; Whereas most children born with NKH do not achieve typical developmental milestones, and those that do may lose these abilities over time; Whereas NKH may be diagnosed by a combination of a physical exam, biochemical testing, and genetic analysis; Whereas there are only approximately 500 cases of NKH diagnosed worldwide; Whereas 4 known patients living with NKH are in Virginia; Whereas Congress can raise awareness of NKH in the public and in the medical community of the United States; and Whereas increased awareness of NKH may result in increased research, participation in NKH patient registries, and diagnoses of NKH cases: Now, therefore, be it

That the House of Representatives— (1) supports the designation of NKH Awareness Day ; and (2) recognizes the importance of raising awareness and improving education around nonketotic hyperglycinemia (NKH).