My Kuvan Trial Journey | Member Blog
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
MDDA eNews | January
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
Important Information about the IEM Food Grant
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.
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
Understanding Parental Perceptions and Current Community Management Strategies for Sleep Problems in Children with Neurodevelopmental Disorders
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.
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
BREAKING NEWS: The Power of Advocacy a win for equitable treatment for the PKU Community
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
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
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
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