Who we are

The Association is based in and around Sydney, NSW Australia but our members are in all states of Australia. Visit our website regularly to keep up with news and events as well as resources available to Australian families living with PKU.

Our Mission Statement

To Promote Awareness of PKU:

  • by providing information and support to individuals affected by PKU and their families;
  • Facilitating interaction between individuals with PKU, families and health care providers;
  • Supporting research into the treatment of PKU, including fundraising for the purpose of research into the treatment of PKU;
  • Lobbying Government bodies where appropriate;

The Story of ‘Phen’ the Platypus

“Phen” the platypus was adopted by the PKU Association of NSW Inc, through a drawing competition done by children with PKU in 2008. The platypus was chosen because it is rare and special as they are the only mammals who lay eggs.

People who are born with PKU are also rare and special as they develop unique qualities which serve them well throughout life!