News Room

  • International PKU Day*

    International PKU Day*

    Celebrating International PKU Day! Today on Friday June 28th, we celebrate International PKU Day! Why the 28th? It’s because a combination of three things:1. Robert Guthrie, the inventor of the newborn […]

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  • 2019 National Family Retreat Registrations are now Open!*

    2019 National Family Retreat Registrations are now Open!*

    Exciting news!!Registrations for the 2019 National Family Retreat are NOW OPEN!The Retreat will take place in beautiful Tasmania from Friday 4th to Sunday 6th October.Come meet other members of the […]

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  • PKU Mums & Bubs Morning Tea @ Royal Melbourne Hospital*

    PKU Mums & Bubs Morning Tea @ Royal Melbourne Hospital*

    MDDA wishes to congratulate the Royal Melbourne Hospital on a great initiative of getting PKU Mums and bubs together to share their experiences. You can read more about the Morning […]

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  • WA Retreat*

    WA Retreat*

    Such a fantastic weekend was had with our wonderful Western Australian families at our retreat on the 30-31st March. It was so fantastic to see so many new faces.A record […]

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  • Raising Awareness at Parliment House*

    Raising Awareness at Parliment House*

    The Metabolic Dietary Disorders Association headed to Australia’s Parliament House in the lead up to Rare Diseases Day on 28 February. Together with Rare Voices Australia, and other important representative groups of rare […]

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  • Australians with a rare genetic disease live on only 1 to 8 grams of protein a day. The Great Protein Challenge asks Australians to walk in their shoes for 24 hours*

    Australians with a rare genetic disease live on only 1 to 8 grams of protein a day. The Great Protein Challenge asks Australians to walk in their shoes for 24 hours*

    Australians are being asked to give up protein for 24 hours during February to help raise much needed awareness and funds to support those living with a debilitating, rare disease […]

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  • MEDIA RELEASE Australia’s only low-protein menu voted a winner for The Grand*

    MEDIA RELEASE Australia’s only low-protein menu voted a winner for The Grand*

    The Grand Hotel Warrandyte has been awarded the People’s Choice Award at the 2018 Australia Hotels Association (AHA) Victorian Awards this year. The Grand has been recognised for launching Australia’s […]

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  • Sapropterin to be listed as a treatment for children and adolescents living with Phenylketonuria – PKU in Australia*

    Sapropterin to be listed as a treatment for children and adolescents living with Phenylketonuria – PKU in Australia*

    The Metabolic Dietary Disorders Association is extremely pleased with the decision of the Pharmaceutical Benefits Advisory Committee (PBAC) to recommend the listing of Sapropterin (sapropterin dihydrochloride) on the Pharmaceutical Benefits Scheme (PBS) for […]

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  • Australia’s first National Rare Diseases Framework*

    Australia’s first National Rare Diseases Framework*

    The Australian Government announces they are taking more action to support people battling rare conditions by developing Australia’s first National Rare Diseases Framework and Action Plan. 16 November 2018 The […]

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