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
Rare Disease Day is celebrated worldwide at the end of February each year as a recognition of those who live with rare disease and to raise awareness of the difficulties of being one of the 6-8% of people with a rare disease. Research brings hope to people living with a rare disease The Rare Disease
We are pleased to announce the generous offer by Vitaflo Australia Pty Ltd in offering travel assistance grants to attend a 2017 International Conference for any IEM. This is a wonderful opportunity for any family member or adult dealing with the daily complex issues of living with an IEM to expand their knowledge, experience and
Calling for applications for the Guthrie-Koch Scholarship Scholarships are open to any college-age young person with PKU who is on diet treatment and is not in graduate school (the scholarship is now open only to undergraduates, a change from previous years due to financial reasons). Residents of any country are eligible to apply, but the
Deakin University are looking for parents of children with a rare disease to take part in a new study: Help us understand your experience of parenting a child with a rare disease Participation simply involves completion of a short online survey with participants eligible to enter a draw to win one of four $100 Coles Supermarket