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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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  • Living With PKU

        • Throughout Life

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  • DHPR Deficiency

Category: For parents

NSPKU School and College Letter

Downloadable letter about extra time in schools

NSPKU Feeding Toddlers

NSPKU A Guide to Weaning

NSPKU Aspartame Factsheet 2026

Aspartame In Medicines: The Facts Download or Print

Oral Health care for children with PKU (Phenylketonuria) a guide for caregivers

Caring for Children with PKU – Family Viewpoints

This downloadable booklet has been written by parents and families who live with PKU and care for children who have […]

Dietary Information Booklet

Dietary Information Booklet : This booklet explains everything about the PKU diet

Blood test guidance

An introduction to Phenylketonuria

Introduction phenylketonuria PKU book what is pku information for new parents

Recent Posts

  • NSPKU 53rd Annual General Meeting (AGM) 2026
  • Living With PKU (for 18 – 35 year olds) An 8-week Facilitated Group Programme
  • Scottish Parliament debate calls for improvements in PKU services and treatment
  • NSPKU Annual Research Awards 2026
  • Sapropterin users – We Need YOU – please help!

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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