NSPKU is the only UK charity dedicated to improving the lives of people living with the rare condition PKU.

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We support activities and events for children and adults with PKU.

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NSPKU relies on fundraisers to support the work we do.

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The National Society for Phenylketonuria (NSPKU) was founded in 1973 as the national charity for people living with the rare metabolic condition phenylketonuria (PKU).  Learn more about what we do and how you can support our work.


030 3040 1090

Calls to the above numbers are charged at standard geographic rate.

Call Me Back

Alternatively, click 'Call me back' and we will call you back at no charge.

New Diagnosis?

We have information for parents and families who have received a new diagnosis of PKU for their baby.  

If you would like to talk to someone, call our helpline on 03030401090 or send an email to

Phenylketonuria (PKU) is a rare metabolic disorder. People with PKU cannot metabolise phenylalanine, an amino acid found in protein foods.

Share PKU dietary updates, along with news, research and advice articles. 

NSPKU is supported by our members and fundraisers. You can join NSPKU to support our work and join our community.

In 2016 we launched our Call for Action campaign to improve the lives of people living with PKU.