Read the MDDA Update for April ’23! Featuring updates on: the Great Protein Challenge for 2023, important information from the IEM Food Grant Webinar, a recipe for a delicious Easter treat and more!
BREAKING NEWS An important win for the Australian PKU Community! 3 April 2023 The Metabolic Dietary Disorders Association (MDDA) is excited to share the long-awaited news that as of 1 April 2023, Kuvan (sapropterin dihydrochloride) is now available on the...
With its success in 2022 and raising an incredible $41,000 our annual fundraising event The Great Protein Challenge is back this May & June! This is MDDA’s only national fundraising event for the year where we aim to raise important awareness and funds in support...
The Department of Health and Aged Care (the Department) review of clients who receive a monthly benefit payment under the Inborn Errors of Metabolism (IEM) program has begun. If you have received a letter from the Department advising that you have an overdue...
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...
