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 – 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
RIDE FOR PKU: Philip, Thomas, William, Sarah and Harry Acton are riding from Townsville to Brisbane to raise money for PKU. Whitsunday Coast Guradian 4th July, 2016 TWO of Philip Acton’s three sons have the rare condition called phenylketonuria, or PKU for short. PKU is a genetic disorder that prevents the normal breakdown
Twelve-year-old Charbel Torbey, with his dad David, has the extremely rare genetic condition tyrosinaemia type 1 (HT-1). Photo: Wolter Peeters The Age 3, July, 2016 View full article here As Charbel’s parents dressed their four-month-old for his christening they noticed his nappy wouldn’t fit over his engorged tummy. “He was really bloated, and his body was
MEDIA RELEASE Father swaps the saddle for the bike to raise awareness for rare genetic disorder In July, a father of three young boys from outback Queensland will swap the stock saddle for a bike to cycle more than 1500 kilometres from Townsville to Brisbane to raise awareness for rare genetic Inborn Error of Metabolism
Join us in celebrating what would have been Robert Guthrie’s 100th birthday. To identify PKU babies affected by Phenylketonuria immediately after birth, Robert Guthrie invented the possibility for newborn screening, also known as the “Guthrie test”. Uncounted patients owe him the chance of early treatment and a normal life without the devastating symptoms of untreated