The National Society for Phenylketonuria (NSPKU) is a charity formed in 1973. It is the world’s oldest patient charity for phenylketonuria.
Our goal is to support people living with PKU across the UK. We do this through our various activities:
- Education and Research: We work closely with a Medical Advisory Panel of expert clinicians and retain a specialist dietitian. We provide trusted, expert dietary guidance, medical information and we support research.
- Support: We work to help people and their families through all stages of their lives. We provide a telephone helpline, online advice and a colour magazine to our members.
- Community: We create a supporting and caring community for people affected by PKU through our annual family conference, regional events, youth activities and social media.
- Advocacy: We are the voice of people living with PKU - with government, public, industry bodies and the media to represent the issues that matter to people living with PKU.
- Campaigning: We campaign for better treatment and understanding for PKU. We provide the Secretariat for the All Party Parliamentary Group for PKU which seeks to raise awareness and improve standards of care.
Our ethos – NSPKU is a small charity without full-time staff or premises. We stay close to the lives and concerns of people living with PKU and aim to serve their needs. NSPKU is managed by people who have personal experience of PKU.