News Room
MDDA Update | March
Read the MDDA Update for March '23! Featuring updates on: IEM Food Grant, '23 Family Retreat, the...
2023 Reminder – Important Information about the IEM Food Grant
The Department of Health and Aged Care (the Department) review of clients who receive a monthly...
MDDA eNews | February
For Rare Disease Day 2023, read our latest eNews! If it’s not landed in your inbox make sure that...
My Kuvan Trial Journey | Member Blog
A Member Blog by Anna Hoar, PKU Adult 27/12/22 Christmas indulgence --> getting my...
MDDA eNews | January
Our first eNews for 2023 has been sent out! If it's not landed in your inbox make sure that you...
Important Information about the IEM Food Grant
The Department of Health and Aged Care (the Department) will be undertaking a review of clients...
2022 MDDA AGM
It's that time of the year again! You are invited to attend the virtual 2022 MDDA Annual General...
Understanding Parental Perceptions and Current Community Management Strategies for Sleep Problems in Children with Neurodevelopmental Disorders
We aim to increase knowledge and understanding of sleep problems in children with...
PKU Gap Research – PKU Qualitative Research – for ages 18-55
Newborn screening for Phenylketonuria has been in place in Australia for over 50 years. Our...
BREAKING NEWS: The Power of Advocacy a win for equitable treatment for the PKU Community
The Power of Advocacy a win for equitable treatment for the PKU Community Metabolic Dietary...
IMPORTANT ANNOUCEMENT – IEM Food Grant August payment
MDDA met with the IEM Department today and they have requested MDDA share the following...
UPDATE: The PBAC Outcome
As we wait for the August announcement on the PBAC meeting outcome to list sapropterin (Kuvan)...
2022 MDDA National Family Retreat – Registrations now OPEN!
THE WAIT IS OVER! Registrations for the MDDA Retreat are now OPEN! MDDA's National Family Retreat...
MDDA Community Announcement
Pharmaceutical Benefits Scheme Safety Net threshold reduction from 1 July 2022 As a cost-of-living...
The Great Protein Challenge 2022 Launch
How #lowpro Can You Go? This May we will once again be running The Great Protein Challenge, a...
Launching Make Some Noise for PKU!
Today we launch our campaign website https://mdda.org.au/makesomenoiseforpku which outlines how...
MDDA Announcement: Ensuring treatment access for all Australians with PKU
MDDA Announcement: Ensuring treatment access for all Australians with PKU 30 March 2022 Today...
Flood Assistance for IEM Families
MDDA sympathises with all of those affected by the catastrophic floods in Queensland and New South...
Low Protein Product Supply – Update 2022
MDDA's highest priority during these times is to make sure that the IEM community has the most...
MDDA December Update
Last night we held another MDDA Update, presented by MDDA Vice President and PKU Mum Louise Healy....
MDDA AGM 2021
The 2021 MDDA Annual General Meeting (AGM) will be held on Tuesday 9th November at 7:45PM AEDT. We...
MDDA August Update
MDDA August Update Last night we held another MDDA Update, presented by MDDA President and PKU Mum...
MDDA July Update
MDDA July Update Last week MDDA Vice President Louise Healy gave an update on what we have been...
ANNOUNCEMENT: MDDA Family Retreat QLD July 2021 – POSTPONED
We’ve made the difficult decision to postpone the MDDA Family Retreat for 2021. While we know...
Dr Jim McGill receives 2021 Australia Day Honours
MDDA extend our most heartfelt congratulations to Dr McGill who was awarded Member (AM) in the...
Kuvan recommended by PBAC for treatment for maternal women living with PKU in Australia
The Metabolic Dietary Disorders Association is extremely pleased with the decision of the...
PBAC Kuvan Deferral for maternal women with PKU
PBAC Kuvan Deferral for maternal women with PKU The Metabolic Dietary Disorders Association...
MDDA Office & Supplier Christmas Trading Hours
MDDA Christmas Office Hours The MDDA Office is taking a break from the 21 December to 8 January...
2021 MDDA Family Retreat Postponement Details
ANNOUNCEMENT: MDDA Family October Retreat QLD – Further Postponed to July 2021 After months of...
MDDA @Home Retreat Video Snapshot
The MDDA @Home Retreat took place October 10th-11th. Our first virtual event was a HUGE success...
Disability Information Hotline
Do you have a disability? Have things changed for you because of coronavirus (COVID-19)? Do you...
MDDA Update – LP Product Supply and Coronavirus
No Change - Due to the Stage 4 restrictions introduced in Victoria, MDDA have been in contact with...
Centre of Community-Driven Research releases report on the impact of COVID-19 on health charities in Australia
This year has been like no other for the MDDA. COVID-19 has put an enormous strain on our...
Celebrating International PKU Day 2020!
Yesterday, June 28th, was International PKU Day! We hope you spent some time celebrating all the...
Phase 2 of Clinical Trials for MMA and PA Treatment Approved in America
MDDA would like to congratulate HemoShear Therapeutics who have received approval to go into phase...
Update of MDDA Advocacy for Future Treatments
For the past 8 years MDDA has been proactively seeking subsidised access to new therapies for all...
MDDA Family October Retreat QLD – Postponed*
ANNOUNCEMENT: MDDA Family October Retreat QLD – Postponed to April 2021 After months of...
Daily Shoppers ‘Community Hour’ for Healthcare Cardholders – Update*
Daily Shoppers ‘Community Hour’ for Healthcare Cardholders – Update Apr 3, 2020 Grocery Shopping –...
Supply – formulas, supplements, low protein products and medicines update
MDDA understand that recently there has been some serious concerns with getting supply of...
A $750 one off Economic Support Payment for those with Carer Allowance*
Mar 19, 2020 As part of the Government’s response to Coronavirus (COVID-19) they are paying $750...
MDDA Coronavirus (COVID-19) Advice Resource
The health and wellbeing of the IEM community is our absolute priority and we are continuing to...
MDDA Update – LP Product Supply and Coronavirus
MDDA have contacted each of the suppliers of medicines, supplement/formula prescription products...
Bushfire assistance for IEM Families in need.
MDDA sympathises with all of those affected by the catastrophic bushfires that are occurring...
New Director of Queensland Metabolic Lifespan Service
After an esteemed career, Dr Jim McGill will retire from clinical Metabolic Medicine on the 31st...
Advocacy in Canberra*
MDDA representatives Louise Healy and Jenny Briant were in Canberra this week continuing to...
International PKU Day*
Celebrating International PKU Day! Today on Friday June 28th, we celebrate International PKU Day!...
2019 National Family Retreat Registrations are now Open!*
Exciting news!!Registrations for the 2019 National Family Retreat are NOW OPEN!The Retreat will...
PKU Mums & Bubs Morning Tea @ Royal Melbourne Hospital*
MDDA wishes to congratulate the Royal Melbourne Hospital on a great initiative of getting PKU Mums...
WA Retreat*
Such a fantastic weekend was had with our wonderful Western Australian families at our retreat on...
Raising Awareness at Parliment House*
The Metabolic Dietary Disorders Association headed to Australia’s Parliament House in the lead up...
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...
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...
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...
Australia’s first National Rare Diseases Framework*
The Australian Government announces they are taking more action to support people battling rare...
Tobias S Hagedorn , Founding Trustee of GAP, public announcement speech*
Public announcement of the foundation of the Global Association for Phenylketonuria (GAP) on July,...
Global Association for PKU (GAP) Unveiled*
(Atlanta, July 7 2018) Today at the NPKUA Conference in Atlanta, Georgia, the Global Association...
PBAC Kuvan – Deferral*
MDDA welcomes the decision by the Pharmaceutical Benefits Advisory Committee (PBAC) to defer the...
Feb 2018 Parliamentary Luncheon – MDDA Speech: Monique Cooper*
MDDA President, Monique Cooper presented at Parliament House, Canberra, on the 15th February 2018...
University of Western Australia Research Survey*
Families living with rare diseases are being invited to complete an online questionnaire about...
How Low Did You Go? Thank you to all of our PLAYERS and PLEDGERS.*
A BIG thank you to all of our Pledgers and Players who took part in the 2018 Great Protein...
![Media Release – When healthy, nutritious foods make you sick … the dilemma facing 1,600[1] Australians*](https://mdda.org.au/wp-content/webp-express/webp-images/uploads/home-mastheads-HLPCYG-b-1030x305-400x250.jpg.webp)
Media Release – When healthy, nutritious foods make you sick … the dilemma facing 1,600[1] Australians*
The Great Protein Challenge to put Aussies in the shoes of those living with a debilitating rare...