Today we launch our campaign website https://mdda.org.au/makesomenoiseforpku which outlines how you can actively support us to ensure equitable access to medications for PKU adults here in Australia.
Did you know? Adults with PKU currently don’t have subsidised access to any prescription medicines to treat their condition – medicines which are already available to adults with PKU around the world. All they have is a strict and impossible diet – and it is just not enough and now is our time to speak up!
We have three messages we want to make loud and clear…and we need you help!
- Why PKU is Important – Simply repost and share our PKU awareness posts and stories that we are soon to start sharing from this page – greater education on PKU is an Important step in this process.
- Why PKU is Hard – Sign up to our Great Protein Challenge and start making some noise via your social media pages to have others Pledge or Play – Understand why PKU is so Hard to manage with diet alone. Sign up here today and pick a Play Date in May this year https://thegreatproteinchallenge.com.au/. Encourage family and friends, local MPs and media to get involved.
- Why PKU is Unfair – Prepare to support our consumer comments process with your own submission – if you are a PKU Adult family member or friend – we would love you to have your say on the importance of having equitable access to all PKU medications available. If you are not a member of our MDDA online PKU community, contact us at [email protected] to find out how you can be connected – and also participate in our PBAC Consumer Voice event on April 19.
More information will be shared to this site moving forward, and we look forward to all of your engagement to help us to really start making some noise for PKU Adults.