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The National Society for Phenylketonuria (NSPKU)

NSPKU is the only UK charity dedicated to improving the lives of people living with the rare condition PKU. Our goal is to support individuals and families living with Phenylketonuria across the UK.

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About PKU
Living With PKU
- - - Throughout Life
    - New diagnosis of PKU?
    - During childhood
    - As a teenager or young adult
    - As an adult
    - During and after pregnancy
  - - Advice and Guidance
    - School and Nursery
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    - Living with PKU – Claiming Benefits
    - Blood test advice
    - Carers of people with PKU
    - FAQ’s
  - - Treatments
    - Clinical centres for PKU
    - Dietary Information
    - Non-Dietary Treatments
    - Untreated or late treated PKU
  - - Other information
    - Useful Documents
    - Useful Links
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Events

You can find out more about events taking place around the UK here.

NSPKU Race to £10K

On Sunday the 15th September 2024 the PKU community will come together to take part in races around the UK to fundraise £10,000 for the NSPKU. Whether you are a gentle jogger or could give Mo Farah a run for his money, we are encouraging everyone to take part in this national fundraiser.

Find out more

For more information use our Contact page or helpline: 030 3040 1090

For PKU Unplanned Pregnancy Emergency Advice please contact your local centre.

You can also use our documents library to access lots of important information

THE NATIONAL SOCIETY FOR PHENYLKETONURIA (UNITED KINGDOM) LIMITED is a charity
registered with the Charity Commission (Company No. 01256124 Charity No. 273670 )