Nutritional Education

Managing the PKU Diet: Raising children, sharing journeys – Learning from each other

Coping with a strict diet is one of the greatest challenges in the daily lives of families with children affected by metabolic disorders. Again and again, it can lead to tension, conflict, and a sense of being overwhelmed — especially for parents.

The aim of the project “Nutritional Education” is to develop a supportive programme for families affected. It seeks to provide knowledge, facilitate exchange with experts, and encourage contact with other families. In particular, it is designed to help new PKU families get started—offering practical guidance in managing the diet and raising children towards an independent, healthy lifestyle.

Key questions include: 

• How can parents today find a balance between the discipline required by the diet and the freedom children need for their development?
• How do families with experience of the diet navigate this journey?

The starting signal for this project was our symposium as part of the ESPKU in September 2025 in Hamburg. (You can find excerpts from it below.)

On this page, we are compiling interesting videos and working materials on this topic for you. Soon, the schedule for follow-up events—both as webinars and in-person—will be published here.
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