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...
We aim to increase knowledge and understanding of sleep problems in children with Neurodevelopmental disorders (ND) – Estimate the prevalence of sleep problems in children with ND in the community. Identify sleep priorities of families and children with ND,...
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...
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...
