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 […]
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 […]
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 […]
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 […]
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 […]
![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 […]
![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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