Skip to content

Helpline: 030 3040 1090 • Celebrating 50 Years and Counting!

  • Facebook
  • X
  • Instagram
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.

MENUMENU
  • Home
  • About PKU
  • Living With PKU

        • Throughout Life

        • New diagnosis of PKU?
        • During childhood
        • As a teenager or young adult
        • As an adult
        • During and after pregnancy

        • Advice and Guidance

        • School and Nursery
        • Holidays and Travel
        • Living with PKU – Claiming Benefits
        • Blood test advice
        • Carers of people with PKU
        • FAQ’s

        • Treatments

        • Clinical centres for PKU
        • Dietary Information
        • Non-Dietary Treatments
        • Untreated or late treated PKU

        • Other information

        • Useful Documents
        • Useful Links
  • Get involved
    • Membership
    • NSPKU Conference
    • Events
    • Campaign
    • Support us
    • Surveys
  • Research
    • Disorder Management
    • New Treatments
    • Diet
    • Guidelines
    • PKU in Adults
    • Maternal PKU
    • NSPKU Research
    • Surveys
  • About us
    • About NSPKU
    • Our Work
    • History of NSPKU
    • Our Team
    • Grant Fund
  • Documents
  • News
    • All News
    • Surveys
    • PKU Diet
    • PKU Experiences
    • Sapropterin
  • Contact us
    • General Enquiries
    • Emergency Contacts
    • Council of Management
  • DHPR Deficiency

Documents

  • All Documents
  • Adults
  • Awareness
  • Campaign
  • Childminders Nurseries and Schools
  • Children
  • Diagnosis
  • Dietary Info
  • Flyers for Fundraisers
  • Flyers Membership
  • For Parents
  • GP / Health Visitor
  • History
  • Maternal PKU
  • Parents
  • Pharmacists
  • Prescriptions
  • Starting Nursery and School
  • Travel
  • Treatments

Title Categories Update Date Download
Dietary Information Booklet 2026
1 127 downloads
 Adults, Childminders, Nurseries and Schools, Children, Diagnosis, Dietary info, Maternal PKU, Parents, Treatment, Woman, Young Adults 18/06/2026 Download
Reproductive experience of women living with PKU
1 84 downloads
 Survey, Woman 25/06/2020 Download

    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

    Copyright © 2026 The National Society for Phenylketonuria (NSPKU) | Design by nooh Studio

    Privacy Policy | Terms & Conditions | Cookie Notification

    THE NATIONAL SOCIETY FOR PHENYLKETONURIA (UNITED KINGDOM) LIMITED is a charity
    registered with the Charity Commission (Company No. 01256124 Charity No. 273670 )
    We use cookies to ensure that we give you the best experience on our website. If you continue to use this site we will assume that you are happy with it.