This website is intended for patient and caregivers in Europe, Canada, Australia and New Zealand
Life is complicated when you don’t have the tools you need.


It’s time to have a different conversation about Phenylkentonuria.

Let’s advocate together for change.

You can have the opportunity to move forward the conversation on PKU unmet needs.

Access the PKU message grid that facilitates advocates to have a different conversation about PKU. The PKU message grid was co-created by the Global PKU International Patient Leaders Council and 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.

Click here to access the PKU message grid

How can I support the Live Unlimited campaign on social media?

You can do this by:

  • Tweeting your local policymaker about the campaign and PKU
  • Sharing and liking the videos on our YouTube channel
  • Sharing campaign content on Facebook, Twitter and Instagram and retweeting content from others in the PKU community
  • Share the link to our website in your own social media posts
  • Download our campaign poster here

How else can I help?

You can help raise awareness of the Live Unlimited campaign and PKU in lots of other ways. For example, request a copy of our campaign pack and share content with your colleagues by email, or bring PKU into the conversation over dinner with friends.

You can email if you want to ask about getting involved in a different way.

Where can I get support for my family or someone I know with PKU?

If you want help, support, or guidance, the community of patient groups in your country are best placed to do this. Check out the Patient Support page for information on these groups and the support they offer.

How can I fundraise or donate to the charities involved?

The Live Unlimited campaign isn’t collecting donations or fundraising. However, you can visit each of the patient organisation websites for information on how you can fundraise and support their activity in other ways. You can find their details on our Patient Support page.

Where can I find out more about PKU?

You can find out more about the disease on the About PKU page, or you can contact your local patient group, who’s details can be found on our Patient Support page.