Phed up is an action group dedicated to campaigning for access to treatment for PKU

Our aims:

  • Freedom of information relating to PKU & treatments
  • Funding for drug treatments by the NHS
  • Realistic prices from drug manufacturers
  • Empowering patient choice
  • Raising awareness of PKU in the media
  • Supporting PKU patients and their families
  • in obtaining the best treatment

Imagine being denied food every day, imagine living on synthetic substitutes, imagine there’s a drug that can help but the NHS refuses funding.

International PKU Day 28th June – Invite your MP to an event being held at the House of Commons to discuss access to Kuvan and any other PKU-related issues that are important to you. This is a fantastic opportunity for your opinions to be heard – Go For It!