Skip to content

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

  • Facebook
  • Twitter
  • Instagrame
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
  • Research
    • Disorder Management
    • New Treatments
    • Diet
    • Guidelines
    • PKU in Adults
    • Maternal PKU
    • NSPKU Research
  • About us
    • About NSPKU
    • Our Work
    • History of NSPKU
    • Our Team
    • Grant Fund
    • Patient Experiences
  • Documents
  • News
  • Contact us
    • General Enquiries
    • Emergency Contacts
    • Council of Management
  • DHPR Deficiency

Author: Helena Traill

Help our new campaign by writing to your MP

27/10/202501/12/2025 Helena TraillLeave a Comment on Help our new campaign by writing to your MP

We need you! Please help us by writing to your MP… Here is how… Download explainer PDF Thank you!

News

We are making our conferences more accessible

21/08/202521/08/2025 Helena TraillLeave a Comment on We are making our conferences more accessible

Find out how we are making our conferences more accessible… Conference Rotation

News

Watch our 50th film here

15/12/202303/07/2024 Helena TraillLeave a Comment on Watch our 50th film here



News

NSPKU Call for Action

12/12/202312/12/2023 Helena TraillLeave a Comment on NSPKU Call for Action

 

News

Celebrating 50 Years & Counting!

18/03/202318/03/2023 Helena TraillLeave a Comment on Celebrating 50 Years & Counting!

NSPKU is celebrating its fiftieth year as an organisation focused on supporting people with PKU. We are using this landmark […]

News

Recent Posts

  • Help our new campaign by writing to your MP
  • We are making our conferences more accessible
  • Sapropterin users: Please help with this survey
  • IMPORTANT NOTICE – CHANGE OF ADDRESS
  • PKU “S.P.O.R.T PROJECT”

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

    Copyright © 2025 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.