News Room

  • Global Association for PKU (GAP) Unveiled*

    Global Association for PKU (GAP) Unveiled*

    (Atlanta, July 7 2018) Today at the NPKUA Conference in Atlanta, Georgia, the Global Association for Phenylketonuria (GAP) was unveiled.  Representatives from patient groups across four continents have been working […]

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  • PBAC Kuvan – Deferral*

    PBAC Kuvan – Deferral*

    MDDA welcomes the decision by the Pharmaceutical Benefits Advisory Committee (PBAC) to defer the listing of Kuvan (sapropterin hydrochloride) on the Pharmaceutical Benefits Scheme (PBS) for Australians living with phenylketonuria […]

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  • Feb 2018 Parliamentary Luncheon – MDDA Speech: Monique Cooper*

    Feb 2018 Parliamentary Luncheon – MDDA Speech: Monique Cooper*

    MDDA President, Monique Cooper presented at Parliament House, Canberra, on the 15th February 2018 with Nicole Millis from Rare Voices Australia. Here is Monique’s speech. Thank you Nicole….Whilst I am […]

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  • University of Western Australia Research Survey*

    University of Western Australia Research Survey*

    Families living with rare diseases are being invited to complete an online questionnaire about preconception carrier-screening (please see web link below). The questionnaire is part of the Australian Genomic Health […]

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  • How Low Did You Go? Thank you to all of our PLAYERS and PLEDGERS.*

    How Low Did You Go? Thank you to all of our PLAYERS and PLEDGERS.*

    A BIG thank you to all of our Pledgers and Players who took part in the 2018 Great Protein Challenge held in February. Your support means so much to us […]

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  • Media Release – When healthy, nutritious foods make you sick … the dilemma facing 1,600[1] Australians*

    Media Release – When healthy, nutritious foods make you sick … the dilemma facing 1,600[1] Australians*

    The Great Protein Challenge to put Aussies in the shoes of those living with a debilitating rare disease From 1 February 2018, Australians will be asked to give up protein for 24 […]

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