The National Society for Phenylketonuria (UK) Ltd.
The NSPKU exists to help and support people living with PKU, their families and carers. It provides support by way of newsletters, family conferences and study days, website and advice via the helpline. The NSPKU works closely with its Medical Advisory Panel (MAP). It receives no government funding and is dependent on the generosity of its members and the public to fund practical support, raising awareness and research into the condition. It publishes a wide range of booklets and leaflets (including food lists) for parents, people with PKU and medical professionals. It provides a voice for members and advocates on their behalf. The NSPKU is run by the Council of Management (COM) who are all volunteers with PKU in their families.