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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: News

Questions and Answers about the NICE decision about Kuvan

25/02/202120/03/2026

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

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 […]

Sheila – Unlocking the Treatment for PKU – Orders outside the UK

13/10/2020

In 1951, Sheila Jones was the first person in the world to be treated for Phenylketonuria (PKU) at Birmingham Children’s […]

Book Launch! Sheila – Unlocking the treatment for PKU – UK orders

12/10/2020

In 1951, Sheila Jones was the first person in the world to be treated for Phenylketonuria (PKU) at Birmingham Children’s […]

Branded Exchange Free Food List

05/05/202005/05/2020

Click here to down load the list:  NSPKU_Branded_Exchange-free_A4_5     This is a list giving examples of foods in 20 […]

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Newer posts

Recent Posts

  • Join Us for International PKU Day 2026!
  • Celebrate PKU day with our new colouring sheet!
  • Write to your MP – ask for their support for fair treatment for PKU
  • Save the Date: Northern Ireland Day Conference 17th October 2026
  • Don’t forget to take part in our surveys

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    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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