[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).
                                 <all>