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...