IV
119THCONGRESS
1
STSESSION H. RES. 385
Expressing support for the designation of May 2, 2025, as ‘‘NKH Awareness
Day’’.
IN THE HOUSE OF REPRESENTATIVES
MAY5, 2025
Mr. V
INDMAN(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 gly-
cine 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;
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•HRES 385 IH
Whereas NKH is caused by a mutation in the glycine cleav-
age 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 phys-
ical exam, biochemical testing, and genetic analysis;
Whereas there are only approximately 500 cases of NKH di-
agnosed 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 in-
creased research, participation in NKH patient registries,
and diagnoses of NKH cases: Now, therefore, be it
Resolved, That the House of Representatives— 1
(1) supports the designation of ‘‘NKH Aware-2
ness Day’’; and 3
(2) recognizes the importance of raising aware-4
ness and improving education around nonketotic 5
hyperglycinemia (NKH). 6
Æ
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