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
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
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
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 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
Kuvan (sapropterin dihydrochloride) has been submitted to the Pharmaceutical Benefits Advisory Committee (PBAC) for consideration to be subsidised on the Pharmaceutical Benefits Scheme (PBS) for responsive patients with PKU. KUVAN is the first and only prescription medicine available for PKU. MDDA is extremely supportive of this announcement as we have made several approaches to the
Our friends at The Grand Hotel Warrandyte have released their latest specialised menu for IEM families and those requiring a low protein diet. The new menu offers a selection of delicious, restaurant quality low-protein menu options including flavoursome starters, mains & desserts. Make sure if you are in Victoria you pay The Grand a visit
LCW spoke to Bianca Albanese, Biomedical Engineer and PKU Advocate about what it means to be a woman in engineering and living with PKU.
The MDDA is very excited and proud to announce our participation in the first global association for PKU. In collaboration with leading International PKU associations and groups, the MDDA is playing a very active role in the establishment of this new global association and further information on our strategic vision can be found herein.
MEDIA RELEASE – Australian first – restaurant creates unique dining experience for families with rare disease
MEDIA RELEASE – FOR IMMEDIATE RELEASE Australian first – restaurant creates unique dining experience for families with rare disease The Grand Hotel Warrandyte today launched a specialised menu for families with rare Inborn Errors of Metabolism (IEM), such as PKU (phenylketonuria), to mark PKU Awareness Month. Eating out for those with an IEM is often
MDDA joins thousands of organisations around Australia to celebrate and recognise the contribution and dedication of their volunteers. MDDA would like to thank our current volunteers and those who have played an integral role in MDDA’s success over the last 20 years. This week is a great time to acknowledge our appreciation of the many
Transcript from Louise Healy, Vice President MDDA Delivered at the Parliamentary launch of the “Fair for Rare” Campaign. Parliament House, Canberra. 16th February 2017. I know this because it has transformed the life of my daughter and our family. At 4 days old Evie got a positive result from the “heel prick” test and was