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Category: Adult

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. […]

Adult, Campaign

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 […]

Adult, Campaign, Children, News

NSPKU Survey for people with PKU aged over 18

10/02/202110/02/2021 Suzanne Ford

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

Adult, Diet, News, Young people

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

22/07/202022/07/2020 Suzanne Ford

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

Adult, Diet, Young people

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

15/07/202015/07/2020 Suzanne Ford

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

Adult, 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 […]

Adult, Children, Diet, Young people

Low Protein Snacks

22/05/202027/07/2020 Suzanne Ford

Low Protein Snacks Download here:  Snacks 2020  

Adult, Children, Diet, Young people

Taking Protein Substitutes – Clair

07/05/202007/05/2020 Suzanne Ford

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

Adult, 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 […]

Adult, Children, Diet, 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

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Recent Posts

  • Sapropterin in Wales
  • Family Conference 2022 – Save the Date!
  • Update on Palynziq/Pegvaliase for PKU
  • Update on availability for sapropterin for PKU
  • Information on NICE Kuvan Decision

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