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 Advisory Committee (PBAC) to recommend the listing of Kuvan (sapropterin hydrochloride) on the Pharmaceutical Benefits Scheme (PBS) for all Australians living with phenylketonuria (PKU) who…
IMPORTANT ANNOUCEMENT – IEM Food Grant August payment
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 of Health and Aged Care’s system.” The Department of Health and Aged…
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 possible outcomes as explained by the Patient Voice Initiative. MDDA will share the outcome here once it is made public. We are prepared and have…
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 location. Unfortunately, due to the COVID-19 pandemic there hasn’t been a Family Retreat since 2019 BUT now we are finally able to come together as…
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 equivalent of 12 fully priced scripts for concession card holders and the equivalent of approximately two fully priced scripts for non-concessional patients.For concessional patients,…
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 to help raise awareness and funds to support people living with rare genetic metabolic (protein) disorders. Most people living with a protein IEM can only…
Launching Make Some Noise for PKU!
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…
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, which will be held from 6-8 July. Two treatments for PKU will be included on the July PBAC Meeting Agenda, and will be considered by…
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 (03) 9723 0600 or office@mdda.org.au and we can connect you with the appropriate resources. We also encourage you to reach out via our Patient-only Facebook support group…
Newsletter Archives
Browse through our library of previous MDDA Matters printed newsletters and click on the image to read or download