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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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Author: kate learoyd

NHS

Watch the NHS England presentation about sapropterin (Kuvan)

22/07/202020/03/2026

NHS England will consider a policy to use sapropterin (Kuvan) for PKU next week.  We have received the following message […]

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 […]

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/

Low protein baking guide

27/03/202027/07/2020

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

Talking PKU in Parliament

17/02/202017/02/2020

[smartslider3 slider=7] When we started our campaign for better care for PKU in Parliament we really wanted to get across […]

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 […]

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Newer posts

Recent Posts

  • Save the Date: Northern Ireland Day Conference 17th October 2026
  • Don’t forget to take part in our surveys
  • Bryan Pearce Art Tours: St Ives 2026
  • NSPKU Competition for International PKU Day
  • Attention women and girls… Complete this survey about periods and PKU

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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