This resolution expresses strong support for designating May 2, 2025, as "NKH Awareness Day" to highlight a critical rare disease. It aims to raise public and medical community awareness regarding Nonketotic Hyperglycinemia (NKH) , also known as glycine encephalopathy, which is a rare genetic metabolic disorder. NKH is caused by a genetic mutation preventing the breakdown of glycine, leading to its accumulation in the body, especially the brain and spinal cord. This severe condition affects approximately 1 in 76,000 people worldwide, with only about 500 diagnosed cases globally, and often prevents affected children from reaching typical developmental milestones. The resolution emphasizes that increased awareness can lead to more research, greater participation in patient registries, and improved diagnoses for those living with NKH.
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Timeline
Submitted in House
Referred to the House Committee on Energy and Commerce.
Submitted in House
Referred to the House Committee on Energy and Commerce.
Health
Expressing support for the designation of May 2, 2025, as "NKH Awareness Day".
USA119th CongressHRES-385| House
| Updated: 5/5/2025
This resolution expresses strong support for designating May 2, 2025, as "NKH Awareness Day" to highlight a critical rare disease. It aims to raise public and medical community awareness regarding Nonketotic Hyperglycinemia (NKH) , also known as glycine encephalopathy, which is a rare genetic metabolic disorder. NKH is caused by a genetic mutation preventing the breakdown of glycine, leading to its accumulation in the body, especially the brain and spinal cord. This severe condition affects approximately 1 in 76,000 people worldwide, with only about 500 diagnosed cases globally, and often prevents affected children from reaching typical developmental milestones. The resolution emphasizes that increased awareness can lead to more research, greater participation in patient registries, and improved diagnoses for those living with NKH.