| 1 | 1 | | IV |
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| 2 | 2 | | 119THCONGRESS |
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| 3 | 3 | | 1 |
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| 4 | 4 | | STSESSION H. RES. 385 |
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| 5 | 5 | | Expressing support for the designation of May 2, 2025, as ‘‘NKH Awareness |
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| 6 | 6 | | Day’’. |
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| 7 | 7 | | IN THE HOUSE OF REPRESENTATIVES |
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| 8 | 8 | | MAY5, 2025 |
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| 9 | 9 | | Mr. V |
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| 10 | 10 | | INDMAN(for himself and Mr. CLINE) submitted the following resolution; |
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| 11 | 11 | | which was referred to the Committee on Energy and Commerce |
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| 12 | 12 | | RESOLUTION |
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| 13 | 13 | | Expressing support for the designation of May 2, 2025, |
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| 14 | 14 | | as ‘‘NKH Awareness Day’’. |
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| 15 | 15 | | Whereas a rare disease is defined as a disease that affects |
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| 16 | 16 | | fewer than 200,000 people in the United States at any |
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| 17 | 17 | | given time; |
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| 18 | 18 | | Whereas children make up more than half of the estimated |
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| 19 | 19 | | 25,000,000 to 35,000,000 people in the United States |
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| 20 | 20 | | living with a rare disease; |
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| 21 | 21 | | Whereas nonketotic hyperglycinemia (NKH) is a rare genetic |
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| 22 | 22 | | metabolic disorder in which abnormally high levels of gly- |
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| 23 | 23 | | cine build up in a patient’s body; |
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| 24 | 24 | | Whereas NKH is also known as glycine encephalopathy; |
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| 25 | 25 | | Whereas NKH affects approximately 1 in 76,000 people |
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| 26 | 26 | | worldwide; |
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| 27 | 27 | | VerDate Sep 11 2014 02:03 May 06, 2025 Jkt 059200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6300 E:\BILLS\HR385.IH HR385 |
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| 28 | 28 | | kjohnson on DSK7ZCZBW3PROD with $$_JOB 2 |
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| 29 | 29 | | •HRES 385 IH |
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| 30 | 30 | | Whereas NKH is caused by a mutation in the glycine cleav- |
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| 31 | 31 | | age enzyme system, meaning that patients cannot break |
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| 32 | 32 | | down glycine, resulting in its accumulation throughout |
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| 33 | 33 | | the body and especially in the spinal cord and brain; |
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| 34 | 34 | | Whereas NKH has 2 forms, severe and attenuated NKH; |
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| 35 | 35 | | Whereas most children born with NKH do not achieve typical |
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| 36 | 36 | | developmental milestones, and those that do may lose |
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| 37 | 37 | | these abilities over time; |
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| 38 | 38 | | Whereas NKH may be diagnosed by a combination of a phys- |
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| 39 | 39 | | ical exam, biochemical testing, and genetic analysis; |
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| 40 | 40 | | Whereas there are only approximately 500 cases of NKH di- |
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| 41 | 41 | | agnosed worldwide; |
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| 42 | 42 | | Whereas 4 known patients living with NKH are in Virginia; |
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| 43 | 43 | | Whereas Congress can raise awareness of NKH in the public |
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| 44 | 44 | | and in the medical community of the United States; and |
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| 45 | 45 | | Whereas increased awareness of NKH may result in in- |
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| 46 | 46 | | creased research, participation in NKH patient registries, |
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| 47 | 47 | | and diagnoses of NKH cases: Now, therefore, be it |
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| 48 | 48 | | Resolved, That the House of Representatives— 1 |
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| 49 | 49 | | (1) supports the designation of ‘‘NKH Aware-2 |
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| 50 | 50 | | ness Day’’; and 3 |
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| 51 | 51 | | (2) recognizes the importance of raising aware-4 |
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| 52 | 52 | | ness and improving education around nonketotic 5 |
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| 53 | 53 | | hyperglycinemia (NKH). 6 |
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| 54 | 54 | | Æ |
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| 55 | 55 | | VerDate Sep 11 2014 02:03 May 06, 2025 Jkt 059200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6301 E:\BILLS\HR385.IH HR385 |
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| 56 | 56 | | kjohnson on DSK7ZCZBW3PROD with $$_JOB |
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