PKU Gap Research – PKU Qualitative Research – for ages 18-55
Newborn screening for Phenylketonuria has been in place in Australia for over 50 years. Our research team are currently conducting a study hoping to understand patient outcomes and the lived […]
BREAKING NEWS: The Power of Advocacy a win for equitable treatment for the PKU Community
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 […]
UPDATE: The PBAC Outcome
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 […]
2022 MDDA National Family Retreat – Registrations now OPEN!
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 […]
MDDA Community Announcement
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 Great Protein Challenge 2022 Launch
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 […]
MDDA Announcement: Ensuring treatment access for all Australians with PKU
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, […]
Flood Assistance for IEM Families
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 […]
Low Protein Product Supply – Update 2022
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, […]
Newsletter Archives
Browse through our library of previous MDDA Matters printed newsletters and click on the image to read or download