National Society for Phenylketonuria (UK)

The National Society for Phenylketonuria (NSPKU) is a non-profit organization in the United Kingdom that is dedicated to providing information and support to people with phenylketonuria (PKU), their families, and their caregivers. PKU is a metabolic disorder characterized by deficiency of the enzyme phenylalanine hydroxylase, which is responsible for converting the amino acid phenylalanine into tyrosine. Without early diagnosis and restricted dietary intake of phenylalanine, an abnormal accumulation of phenylalanine may affect the normal growth and development of the brain, resulting in progressive, severe mental retardation. The National Society for Phenylketonuria was established in 1973. Its membership currently consists of over 900 families and individuals as well as more than 170 medical professionals. The society is committed to offering a network of local support groups; conducting annual conferences as well as other events throughout the year; developing and distributing targeted publications, such as materials for people with PKU, parents, medical professionals, or other professionals, such as employers or teachers; and funding the analysis of foods and the provision of equipment for PKU genetic research.