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The National Society for Phenylketonuria (NSPKU)

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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Category: Children

Information on NICE Kuvan Decision

20/08/202123/08/2021 Suzanne Ford

  NICE recommendations about sapropterin (Kuvan). What they mean for patients with PKU:   Who is NICE and what has […]

News, Adult, Campaign, Children

NSPKU Survey for children with PKU aged 18 or under (for carer/parent to complete)

10/02/202110/02/2021 Suzanne Ford

This survey is for children aged 18 or under (the carer/parent or guardian to complete) and the survey is about […]

News, Children, Diet, Young people

Guides to help you shop for the PKU diet

29/05/202028/08/2020 kate learoyd

  Shopping for the PKU diet is always challenging. Have you looked at our new colour guides with ideas of […]

Diet, Adult, Children, Young people

Low Protein Snacks

22/05/202027/07/2020 Suzanne Ford

Low Protein Snacks Download here:  Snacks 2020  

Adult, Children, Diet, Young people

Dietary Information for the Treatment of Phenylketonuria

05/05/202006/05/2020 Suzanne Ford

The NSPKU has published a new edition of the dietary information booklet for the treatment of PKU. Click here to […]

Diet, Adult, Children, Young people

School Meals – the PKU Diet at School

01/05/2020 Suzanne Ford

A practical guide for schools catering for a child with PKU (Phenylketonuria) Click here to download:  School_Meals A5 Single  

Diet, Children

New guide to PKU Food Exchanges

31/03/202008/04/2020 kate learoyd

This useful picture guide to PKU food exchanges has been compiled by Birmingham Children’s Hospital. Click here: https://nspku.org/download/food-exchanges-list/

Diet, Adult, Children, Young people

Low protein baking guide

27/03/202027/07/2020 kate learoyd

Baking is a fun activity for both adults and children.  Have a look at this full colour guide to baking […]

Children, Diet

Help with research about children’s experience of school food for PKU

27/03/202027/03/2020 kate learoyd

Hannah Jones, working with the NSPKU, needs your help. Hannah is a dietetic student at Birmingham City University. She is […]

Children, Diet
NHS

NSPKU guidance re Coronavirus (COVID-19)

13/03/202027/03/2020 kate learoyd

CONSIDERATIONS FOR PEOPLE LIVING WITH PKU People living with PKU may be concerned about the impact of Coronavirus (COVID-19) and […]

Adult, Children, Diet, News

Recent Posts

  • Price of Stamps in PKU – OfCom Interviews
  • NSPKU Scotland Conference 2025 – Our supporters
  • NSPKU Scotland Conference 2025 – Ceilidh
  • NSPKU Scotland Conference 2025
  • IMPORTANT NOTICE – CHANGE OF ADDRESS

Recent Comments

    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

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