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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: Young people

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

10/02/202125/03/2026

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

NSPKU Survey for people with PKU aged over 18

10/02/202125/03/2026

This survey is for everyone with PKU aged over 18 (or their carers, parent or family member) and the survey […]

PKU Baking: overcoming guilt or fear of failure…. a blog by Clair

22/07/202025/03/2026

PKU Baking… overcoming guilt or fear of failure: Following on from my blog about cooking….baking is also something I was […]

Cooking for myself… a break from Crisps and Soup! A blog from Clair

15/07/202025/03/2026

Cooking for Myself… a break from crisps and soup! Cooking with PKU is a difficult one, as well as the […]

Guides to help you shop for the PKU diet

29/05/202028/08/2020

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

Low Protein Snacks

22/05/202027/07/2020

Low Protein Snacks Download here:  Snacks 2020  

Taking Protein Substitutes – Clair

07/05/202025/03/2026

Taking Protein Substitutes:    Is there an Emotional wall? When you start to learn how to manage your own PKU […]

Dietary Information for the Treatment of Phenylketonuria

05/05/202006/05/2020

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

New guide to PKU Food Exchanges

31/03/202008/04/2020

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/

Meet Chloe!

17/02/202020/03/2026

Hey I’m Chloe! I’m twenty- two years old and I have PKU. I currently live with my parents and brother […]

Recent Posts

  • NSPKU 53rd Annual General Meeting (AGM) 2026
  • Living With PKU (for 18 – 35 year olds) An 8-week Facilitated Group Programme
  • Scottish Parliament debate calls for improvements in PKU services and treatment
  • NSPKU Annual Research Awards 2026
  • Sapropterin users – We Need YOU – please help!

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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