NKH International Family Network

NKH International Family Network is a voluntary organization dedicated to providing information and support to parents with children affected by non-ketotic hyperglycinemia. A rare inherited metabolic disorder that affects infants soon after birth, non-ketotic hyperglycinemia is caused by impairment in the breakdown of the amino acid glycine. As a result, affected infants exhibit an abnormal accumulation of glycine in body fluids, primarily the blood, cerebrospinal fluid, and urine. Symptoms and physical features may include failure to gain weight and grow at the expected rate; abnormally low muscle tone; drowsiness; episodes of uncontrolled electrical disturbances in the brain; repeated, brief, shock-like muscle spasms of the arms, legs, or entire body; and mild to severe mental retardation. Established in 1995, the NKH International Family Network provides networking services that enable parents and family members to exchange information, support, and resources. It has a registry, provides referrals, and offers the “NKH International Family Network Newsletter.”