The Power of Advocacy a win for equitable treatment for the PKU Community Metabolic Dietary Disorders Association and PKUNSW Association are extremely pleased with the decision of the Pharmaceutical Benefits Advisory Committee (PBAC) to recommend the listing of Kuvan...
MDDA met with the IEM Department today and they have requested MDDA share the following statement:” “There has been a delay to the monthly payment of the Inborn Errors of Metabolism (IEM) program in August 2022 due to administrative issues within the Department...
As we wait for the August announcement on the PBAC meeting outcome to list sapropterin (Kuvan) & pegvaliase (Palynziq) on the PBS we would like to share with you 3 possible outcomes as explained by the Patient Voice Initiative. MDDA will share the outcome here...
THE WAIT IS OVER! Registrations for the MDDA Retreat are now OPEN! MDDA’s National Family Retreat is our hallmark event that usually occurs once a year in a prime interstate location. Unfortunately, due to the COVID-19 pandemic there hasn’t been a Family...
Pharmaceutical Benefits Scheme Safety Net threshold reduction from 1 July 2022 As a cost-of-living measure, the Australian Government is lowering the PBS Safety Net thresholds from 1 July 2022 by the equivalent of 12 fully priced scripts for concession card holders...
How #lowpro Can You Go? This May we will once again be running The Great Protein Challenge, a national effort where challengers strive to eat under 10 grams of protein to help raise awareness and funds to support people living with rare genetic metabolic (protein)...
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...
MDDA Announcement: Ensuring treatment access for all Australians with PKU 30 March 2022 Today (Wednesday, 30 March), the Pharmaceutical Benefits Advisory Committee (PBAC) published the agenda for its next meeting, which will be held from 6-8 July. Two treatments for...
MDDA sympathises with all of those affected by the catastrophic floods in Queensland and New South Wales. We encourage any IEM families seeking assistance to contact the MDDA directly at (03) 9723 0600 or [email protected] and we can connect you with the appropriate...
MDDA’s highest priority during these times is to make sure that the IEM community has the most accurate and up-to-date information when it comes to supply of low protein food, supplements and medication. We are working in a collaborative manner with all...
Last night we held another MDDA Update, presented by MDDA Vice President and PKU Mum Louise Healy. It included an update of everything we have done in the last 2 months including a recap of events and an Advocacy update. Watch the video below and make sure you stay up...
The 2021 MDDA Annual General Meeting (AGM) will be held on Tuesday 9th November at 7:45PM AEDT. We invite all MDDA members and guests to attend virtually. The AGM will take place on the Member Connect Hub. If you have any questions or are unsure of your Hub login...