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 […]
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 […]
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 […]
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 […]
Tobias S Hagedorn , Founding Trustee of GAP, public announcement speech*
Public announcement of the foundation of the Global Association for Phenylketonuria (GAP) on July, 6th, 2018 at the occasion of the NPKUA-Conference in Atlanta, Georgia (USA)Tobias S. Hagedorn, Founding Trustee of […]
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 […]
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