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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

Survey on Home Monitoring for Parents of children with PKU up to 18 years old

06/02/202324/03/2023 Suzanne FordLeave a Comment on Survey on Home Monitoring for Parents of children with PKU up to 18 years old

  Are you a parent of a child up to the age of 18, who has PKU?  If so please […]

Children, News, Young people

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

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Older posts

Recent Posts

  • Host your own 50th fundraiser for the NSPKU
  • Celebrating 50 Years & Counting!
  • Survey of Home monitoring for people with PKU who are 12 years old and over
  • Survey on Home Monitoring for Parents of children with PKU up to 18 years old
  • Sapropterin in Scotland

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