Celebrating International PKU Day! Today on Friday June 28th, we celebrate International PKU Day! Why the 28th? It’s because a combination of three things:1. Robert Guthrie, the inventor of the newborn screening test, was born June 28th, 1916,2. Horst Bickel, the...
Exciting news!!Registrations for the 2019 National Family Retreat are NOW OPEN!The Retreat will take place in beautiful Tasmania from Friday 4th to Sunday 6th October.Come meet other members of the MDDA community, and their families, in a fun and social environment...
MDDA wishes to congratulate the Royal Melbourne Hospital on a great initiative of getting PKU Mums and bubs together to share their experiences. You can read more about the Morning Tea here. This is going to be an annual event with next year set to include...
Date: May 19, 2019 Ben is running again! This time a full marathon. You may remember Ben ran the Warburton half marathon earlier in the year and raised an amazing $480 for the MDDA. This time Ben will be competing in the Great Ocean Marathon (44km) on Sunday the 19th...
Such a fantastic weekend was had with our wonderful Western Australian families at our retreat on the 30-31st March. It was so fantastic to see so many new faces.A record for the most adults (once again) at any retreat to date and also most partners/spouses (ever)...
The Metabolic Dietary Disorders Association headed to Australia’s Parliament House in the lead up to Rare Diseases Day on 28 February. Together with Rare Voices Australia, and other important representative groups of rare diseases from across Australia, we were there...
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 which means they can only eat 1 to 8 grams of protein a day, less than one egg. The...
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 only low-protein specialised menu for families with a rare Inborn...
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 children...
We are really excited to announce that our 2019 National Family Retreat will be held in Tasmania on 4-6 October at the Tamar Valley Resort in Grindelwald. Date: October 4, 2019 – October 6, 2019 Time: 3:00 pm to 2:00 pm Set on over 150 magnificent acres amid...
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 Liberal National Government is taking more action to...
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 GAP Introduction Good morning everybody! I am Tobias...
