05/24/2026
📢 Calling adults with PKU!
Are you aged 16 or over and living with PKU? We’re inviting adults with PKU from ALL OVER THE WORLD to take part in an important questionnaire about everyday life with PKU.
PKU is more than just diet management. Many adults experience challenges with:
🧠 Concentration & memory
📅 Planning & organisation
💬 Social relationships
💼 Work & education
🏠 Independence in daily life
💛 Emotional wellbeing
Although early treatment prevents severe disability, there is still very limited research about how PKU affects real-life functioning in adulthood. This study aims to change that and YOUR voice can help make it happen.
By completing the questionnaire, you can help:
✔️ Improve understanding of adult PKU
✔️ Support better services and care
✔️ Guide future research
✔️ Highlight the real experiences of adults living with PKU
✔️ Strengthen patient-centred support worldwide
📝 Take part here:
https://forms.cloud.microsoft/pages/responsepage.aspx?id=4ZgtEu8sd0WRa6Q7uQHdUbZ_NQ3b-DhLm6nbJ30KKlNUNFpTMEY4SVQyWTkwR1FEVjZIWDI2VjE2OS4u&route=shorturl
This research is led by Dietetic Team at Birmingham Children's Hospital.
🔄 Please take part and SHARE this post so we can reach as many adults with PKU as possible! Every response matters and helps turn lived experiences into research evidence that could improve the future of adult PKU care worldwide. 🌍
Together, we can make adult voices heard.