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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.

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
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  • Research
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  • About us
    • About NSPKU
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  • Documents
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  • Contact us
    • General Enquiries
    • Emergency Contacts
    • Council of Management
  • DHPR Deficiency

Author: Helena Traill

NSPKU England Conference 2026

15/12/202515/12/2025 Helena TraillLeave a Comment on NSPKU England Conference 2026

NSPKU England Day Conference 18th April 2026 Crewe Hall Hotel & Spa, Crewe  

News

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

  • Scottish Parliament debate calls for improvements in PKU services and treatment
  • NSPKU Annual Research Awards 2026
  • Sapropterin users – We Need YOU – please help!
  • NSPKU England Conference 2026
  • Help our new campaign by writing to your MP

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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