This website is intended for residents of the United States of America interested in Phenylketonuria, also called PKU

Planning for lifetime management

Develop healthy habits early on for lifelong PKU management.

PKU should be managed as early as possible in a child’s life. Start lifelong management with support from a PKU clinic and have frequent, honest conversations. Your clinical care team will teach you the best ways to manage PKU.

Vegetables on a table top

With PKU, the foods you eat directly impact the way you think and feel.

Phenylalanine (Phe) is present in almost all natural protein-containing foods. Your clinical care team will help you determine how much Phe should be part of your diet.

Learn new ways to cook for a person with PKU. Change up your PKU-friendly menu with these recipes.

PKU-friendly recipes

Help prepare your child to manage PKU in their future.

Step 1

I do; you watch

  • Explain everything you do and why it is important
  • Demonstrate the order of activities and ensure your child is watching
Step 2

I do; you help

  • Work together with your child and help them along as needed
  • Ask questions to see if your child knows why this routine is important
Step 3

You do; I help

  • Set small, achievable goals, and try to make it fun to form these habits
  • Step in with support when needed, and remind your child why this routine is so important
Step 4

You do; I watch

  • Set larger goals for the future, and allow your child to take charge of their routine
  • Help them along, but try not to step in too early. Making mistakes will help them learn and prepare for their future
Photo montage

Stay connected with social media.

Seeing what others have to say can help you better manage your PKU. Learn how others are managing their PKU.

Join the community

Tips for talking to your care team.