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

Your child and PKU

A healthy routine is important for both you and your child living with PKU.

Start healthy routines while your child is young, and let them learn from your example. This can help you teach your child the best ways to care for their PKU—because it will become their job when they grow older.

Set your child up for success with this 3-step approach to managing PKU.

Habits are at the center of knowledge, skills, and drive, because forming habits early can help you and your child address challenges with treatment right away.

Provide knowledge

What to do and why

Inspire drive

Want to do it

Teach skills

How to do it

“Lifelong management of PKU is so important, because it affects her brain”

See how PKU families are developing healthy habits and routines

Work closely with your PKU care team.

Your care team will help you determine what’s most important for managing PKU, as this can be different for everyone. Set yourself and your family up for success by creating a PKU care plan tailored to your individual needs.

Start today with these four healthy habits

When a teacher or another parent asks about PKU, what do you say?

Sure, it might be easy to describe PKU as a diet thing, but the truth is—it’s really a brain thing.

So next time, try explaining the impact that PKU has on a developing brain. This will help others understand how important it is to pay attention to the foods your child is eating.

Planning for the future

Planning for the future with PKU.


Build your circle of support.

Upcoming events

Educational PKU events are a great place to connect with the community and can provide access to useful information as well as to other people who are caring for children with PKU. You can attend an event in person or participate online in a virtual PKU event.