119-hres385

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 385 Introduced in House

    (IH) ]

<DOC>

119th CONGRESS
 1st Session
H. RES. 385

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

_______________________________________________________________________

 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
 Resolved, 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) .
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