2022 MDDA AGM

2022 MDDA AGM

It’s that time of the year again! You are invited to attend the virtual 2022 MDDA Annual General Meeting on Wednesday 30th November 2022 with Guest Speakers; Dr Sarah Donoghue & Dr Drago Bratkovic.  The formal AGM will be preceded by 2 guest speakers Dr...
2022 MDDA AGM

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 experience is for patients who were diagnosed by newborn screening in...
2022 MDDA AGM

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...
2022 MDDA AGM

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...
2022 MDDA National Family Retreat – Registrations now OPEN!

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...
2022 MDDA AGM

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...
The Great Protein Challenge 2022 Launch

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)...
Launching Make Some Noise for PKU!

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...
Flood Assistance for IEM Families

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 [email protected] and we can connect you with the appropriate...