UK (English)
PKU patients and advocates for lifelong management
PKU resources and advocacy groups.
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Blood Phe control questionnaire ›
Learn why it’s important for people with PKU to keep blood Phe levels within recommended ranges.
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Methods for tracking Phe ›
Three different methods for tracking Phe intake. Work with your dietitian to choose what works best for you.
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PKU clinic discussion guide ›
A guide to help begin a meaningful discussion with your care team about your experiences living with and managing PKU.
The websites below can help you become an advocate within the PKU community.
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The European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (ESPKU)
ESPKU is the umbrella organisation of about 41 national and regional associations from 31 countries established by parents that aims to improve the quality of life of those with PKU