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 towards this dream since it was first conceived of in Dublin, Ireland 2016. Representative from Germany, Tobias Hagedorn stated, “I am proud and deeply humbled that it…
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 (PKU). Whilst it is disappointing not to have received a positive recommendation, the deferral means the PBAC recognises the benefit of Kuvan for some PKU…
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 here today representing the MDDA as their president, I also stand before you as a parent of a child diagnosed with a rare disease known…
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 Alliance (AGHA) preconception carrier screening flagship program being drafted currently. The study is being conducted by a multidisciplinary research team led by Professor Nigel Laing…
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 and all those people living with PKU who have to ‘go low pro’ every single day. We raised over $16000 in our first year launch…
![Media Release – When healthy, nutritious foods make you sick … the dilemma facing 1,600[1] Australians*](data:image/svg+xml;base64,PHN2ZyB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciIHdpZHRoPSIzMDAiIGhlaWdodD0iMTI5IiB2aWV3Qm94PSIwIDAgMzAwIDEyOSI+PHJlY3Qgd2lkdGg9IjEwMCUiIGhlaWdodD0iMTAwJSIgc3R5bGU9ImZpbGw6I2ZmZmZmZjtmaWxsLW9wYWNpdHk6IDAuMTsiLz48L3N2Zz4=)
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 hours to help raise much needed awareness and funds to support those living with a debilitating, rare genetic metabolic disorder – called Phenylketonuria or PKU. This includes abstaining from…
![Media Release – When healthy, nutritious foods make you sick … the dilemma facing 1,600[1] Australians*](https://mdda.org.au/wp-content/webp-express/webp-images/uploads/home-mastheads-HLPCYG-b-1030x305.jpg.webp)
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