For Rare Disease Day 2023, read our latest eNews! If it’s not landed in your inbox make sure that you email [email protected] to be added to the subscriber list. You can read the full eNews below.
A Member Blog by Anna Hoar, PKU Adult 27/12/22 Christmas indulgence –> getting my phenylalanine levels down to trial Kuvan. Wish me luck! 14/1/23 So, I’ve decided to document this process for my own records and for anyone who is interested. Kuvan has finally been...
Our first eNews for 2023 has been sent out! If it’s not landed in your inbox make sure that you email [email protected] to be added to the subscriber list. You can read the full eNews below.
The Department of Health and Aged Care (the Department) will be undertaking a review of clients who receive a monthly benefit payment under the Inborn Errors of Metabolism (IEM) program. The review will focus on ensuring client contact details are current and that...
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...
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...
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...
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...
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)...
