This website is intended for patient and caregivers in Europe, Canada, Australia and New Zealand


It’s time to have a different conversation about Phenylketonuria: The PKU message grid.

What the grid is.

The PKU message grid is a tool for all manner of PKU advocates to align on strategic conversations, gain insights from the key audiences, and learn how to advocate together for change

Why the grid was developed.

The PKU International Patient Leaders Council identified the need for a different conversation with audiences to advocate for people living with PKU.

PKU advocates have the opportunity to move the conversation forward. To facilitate these conversations, the PKU message grid was designed to be easy to use and suggests topics for people to think about, discuss with each other and even challenge the provided statements with their own individual perspectives. The grid will continue to update and improve from the use and input of the community of global PKU advocates.

How it works

The grid is designed to provide example questions and messages for anyone advocating for people living with PKU. It is developed from the perspective of who you speak with and what you want to discuss with them.

Select the audience: Patients, Family members, Peers, Healthcare, Policy, Industry.

Select the theme: Mental Health, Concentration, Social Impact, Relationships, Work & Education, Aging population

Select the sub-population where possible, e.g. Patients are divided into child, teen, adult, and elderly.

Select the question, listen to the reply and adapt the suggested reply; the grid offers a co-created message related to that question.