News Room

  • MDDA eNews | January

    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 […]

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  • Important Information about the IEM Food Grant

    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. […]

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  • 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 […]

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  • Understanding Parental Perceptions and Current Community Management Strategies for Sleep Problems in Children with Neurodevelopmental Disorders

    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. […]

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  • PKU Gap Research – PKU Qualitative Research – for ages 18-55

    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 […]

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  • BREAKING NEWS: The Power of Advocacy a win for equitable treatment for the PKU Community

    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 […]

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  • IMPORTANT ANNOUCEMENT – IEM Food Grant August payment

    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 […]

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  • UPDATE: The PBAC Outcome

    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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  • 2022 MDDA National Family Retreat – Registrations now OPEN!

    2022 MDDA National Family Retreat – Registrations now OPEN!

    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 […]

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Newsletter Archives

Browse through our library of previous MDDA Matters printed newsletters and click on the image to read or download