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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

Sapropterin picture

Sapropterin in Scotland

11/11/2022 kate learoydLeave a Comment on Sapropterin in Scotland

NHS Scotland allows prescribing of sapropterin (previously known as Kuvan) for PKU  NSPKU is delighted to announce that NHS Scotland […]

News

Update on Palynziq/Pegvaliase for PKU

25/03/2022 kate learoyd

NSPKU has recently had discussions with BioMarin, the manufacturer of the injectable PKU medicine for adults called pegvaliase or Palynziq. […]

Campaign, Adult

Update on availability for sapropterin for PKU

17/12/2021 kate learoyd

  NHS England has today (17 December 2021) announced that it will make the medicine sapropterin for PKU available to […]

News

Questions and Answers about the NICE decision about Kuvan

25/02/2021 kate learoyd

Who is NICE and what are they doing?   NICE is the “National Institute for Health and Care Excellence”.  It […]

News
NHS

Watch the NHS England presentation about sapropterin (Kuvan)

22/07/202027/07/2020 kate learoyd

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

Campaign

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

Polly writes on “PKU in the Lockdown”

03/04/202003/04/2020 kate learoyd

PKU & Lockdown Greetings fellow travellers on the PKU road. My name is Polly and I write about my PKU […]

Adult, Diet

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
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