Supporting those with an inherited metabolic disorder and their families so that they can thrive and live their best life.
We raise awareness of inherited metabolic disorders like PKU and other rare IEpMs, we build programs and develop resources from newly diagnosed infants through all life stages.
“MDDA provides me with a window to what is happening in Australia with regards to my PKU and allows me to reach out to others”
Philip
“As a MDDA member I feel connected and not alone with my son’s diagnosis. It eases my mind and reduces my anxiety. I know I will get help if I need it”
Melissa
Diet
The Low Protein Diet is for life for people living with an inherited metabolic disorder.
Care & Support
The MDDA offers various resources and programs to assist in diagnosis and management.
News Room
MDDA Matters February eNews 2025
The February edition of our e-news is here! This month, we’re recognising Rare Disease Day, celebrating a huge advocacy win for low-protein milk on the PBS, and looking ahead to […]
Low-Protein Milk to Remain on the PBS: A Win for Our Community
Advocacy isn’t easy, but for MDDA, it’s essential. The availability of low-protein milk substitutes under the PBS has been uncertain, creating unnecessary stress for individuals and families managing a low […]
Moderna Abandons Australian Rare Disease Community by Withdrawing from Clinical Trial Melbourne, Australia – 17 February 2025 –
The Metabolic Dietary Disorders Association (MDDA), along with patients and clinicians, are profoundly disappointed by Moderna’s sudden decision to withdraw the Australian clinical trial for Methylmalonic Acidemia (MMA) and are […]
Nutricia Store Website Update
📢 Community Announcement: NutriciaStore Website Update 📢 We’re sharing an update from Nutricia regarding the NutriciaStore website (www.nutriciastore.com.au). For those in our community who rely on NutriciaStore for low-protein ‘Loprofin’ products, here’s what […]
Events
2025 NSW National Family Retreat
Location: Fairmont Resort, Blue MountainsDate: November 21-23, 2025 Join us for an unforgettable weekend at the 2025 MDDA National Family Retreat, held at the stunning Fairmont Resort in the Blue […]
Christmas Appeal 2024
This Christmas, we invite you to be part of something truly special. Metabolic Dietary Disorders Association Inc (MDDA) are the national peak consumer body dedicated to supporting, educating, connecting, and representing […]
Upcoming 2024 MDDA Annual General Meeting
📢 Upcoming 2024 MDDA Annual General Meeting 📢 We’re excited to announce that the MDDA Annual General Meeting (AGM) will be happening soon! This is an important opportunity for our community to […]
MDDA Adult PKU/IEM Lived Experience Support Group
Join us online monthly for our MDDA Adult PKU/IEM Lived Experience Support Group where we’ll chat about all things PKU, IEM, and beyond! 🗓 When: First Wednesday of every month. 🕒 Time: 7:30 PM – 8:30 […]
🌟 Good Luck to Our New School Starters and Returning Students! 🌟
Starting or heading back to school is such an exciting milestone—especially for children with Inborn Errors of Metabolism (IEM). To all our little champions, we’re cheering you on as you take on new adventures, make new friends, and continue to shine! 🌈✨
For parents and caregivers, preparation is key to ensuring a smooth transition and supporting your child’s well-being. Here are some tips from our comprehensive online resource to help you feel ready! You can access our full set of school starter tips by following the link here https://mdda.org.au/school-starters/.
We’re here to help—if there’s anything you need on your journey, please don’t hesitate to reach out! 💙
25 for 25: Make This Christmas Truly Special! 🎄
This festive season, we’re embracing the magic of 25 with our 25 Days of Christmas campaign! Together, we’re aiming to raise $25,000 by December 25th to support families living with Inborn Errors of Protein Metabolism (IEpM).
Did you know? Each year, approximately 25 babies are born in Australia with an IEM. That’s 25 little lives, 25 families, and countless moments where your support can make all the difference.
Here’s how you can help:
🎁 Donate $25 (or more!)—every dollar counts via our https://www.givenow.com.au/mdda-appeal
🎁 Share this campaign with your friends, family, and community.
🎁 Join us in spreading awareness this holiday season.
Every $25 raised brings connection, care, and support to those families. Together, we can ensure no one living with an IEM faces the future alone.
Let’s make the 25 Days of Christmas a time of generosity, joy, and real impact. 💛 Donate today and help us hit our $25,000 goal by December 25th! 🌟
🌟 A Huge Thank You to Our Amazing Sponsors and Donors! 🌟
We are incredibly grateful to all our sponsors who made the 2024 MDDA National Family Retreat an unforgettable experience for everyone involved. Your support has allowed us to bring the IEM community together, share knowledge, and create lasting memories for those who attended.
A special shoutout to our sponsors: BioMarin, Cortex Health, iECURE, Menarini, Nutricia, PTC Therapeutics, Vitaflo
We also want to recognise the following companies who provided delicious treats: Well and Good, OMG Donuts, Liberate Foods, Sweet William Chocolate, Cheer Cheese, Syndian, Bite Me Fine Foods
A huge shout out to Pauline PKUNana and The Grand Hotel Warrandyte for the delicious low protein menu, preprepared with care and love!
Thank you for being part of our mission to support families living with IEMs. We couldn’t have done this without your generosity and commitment!
#MDDA #FamilyRetreat #Gratitude #ThankYou #CommunitySupport
Are you up for the Challenge in 2024!? #greatproteinchallenge #howlowprocanyougo #lowpro #iem
🌍 Celebrating Rare Disease Day 🌍
Rare Disease Day happens every year on February 28 (or 29 in leap years)—the rarest day of all. For MDDA and the IEM community, Rare Disease Day is a chance to share our experiences, teach others about living with a rare disease, and talk to policy makers. It creates a feeling of togetherness and common goals as we go through life in the IEM community. Let’s stand together on Rare Disease Day, raising awareness, pushing for change, and supporting each other on our special journey. This day reminds us that even though globally each rare disease affects only a small number of people, together they impact over 300 million individuals worldwide. Rare Disease Day brings hope and strength to many of us. It shows that our challenges are recognised, and our efforts to speak up can make a real difference. This day sheds light on the unique obstacles we face, from limited treatment choices to the complexities of managing our health. By spreading awareness, Rare Disease Day helps us get more funding for research, find new solutions, and improve access to the right healthcare.
Rare Disease Day 2024 🤝 🌐💚 Share your story, spread the word. Let’s make Rare Disease Day a day that transforms lives! 🚀 #RareDiseaseDay #UnityInRare #MDDA
MDDA raise awareness of inherited metabolic disorders like PKU and other rare IEMs, we build programs and develop resources for the newly diagnosed infants through all life stages.
Our cause relies on the kindness and generosity of donors to enable us to provide essential resources and support to those who need it most. Every dollar donated goes directly toward funding our programs and initiatives, allowing us to create positive change in the IEM community.
As the last day of the financial year we are reaching out to request your generous contributions to help us continue making a difference. All donations over $2 are tax deductible this financial year.
Donations to support our mission can be made here https://mdda.org.au/donate/
Like to know more about the care and support we provide visit us at https://mdda.org.au/
MDDA RETREAT REGISTRATIONS ARE NOW OPEN!
Our hallmark event of the year, the MDDA National Family Retreat brings the IEM community together for a weekend of fun, kids & teens club, time to catch up with friends, make new friends, learn new things, great food and so much more! Register here mdda.org.au/retreat
We have a comprehensive retreat website where you will find everything you need to know about the weekend. How to register, great discounted retreat and accommodation packages, travel info etc. Numbers are strictly limited and room availabilities if extending will fill up fast – so don’t delay, secure your spot today!
If you have any questions about the event feel free to email [email protected]
Happy Mother’s Day to all the wonderful IEM Mums!
Today we are celebrating all of our IEM Mums who support and love us every day! Thank you for everything that you do!
A big hug to all our Mum’s this Mothers Day!
Happy Easter from all of us at MDDA!
We hope that you are enjoying the long weekend and spending quality time with family and friends! We hope that you all got a visit from the Easter Bunny and received some delicious LowPro chocolate.
Share with us your LowPro Easter Inspo & Hacks!
BREAKING NEWS - An important win for the Australian PKU Community!
The Metabolic Dietary Disorders Association (MDDA) is excited to share the long-awaited news that as of 1 April 2023, Kuvan (sapropterin dihydrochloride) is now available on the Pharmaceutical Benefits Scheme (PBS) for the treatment of sapropterin-responsive adults living with hyperphenylalaninemia (HPA) due to phenylketonuria (PKU)! This follows the positive recommendation from the Pharmaceutical Benefits Advisory Committee (PBAC) in July 2022, which found that “sapropterin provides, for some patients, a significant improvement in efficacy over a Phe-restricted diet alone” and acknowledging “there was a high clinical need in a small patient population.”
To read our full statement visit our website (link in bio)
Returning for 2023….The Great Protein Challenge
Our community knows how to rally the troops when we need and now is the time! Spread the word… get your family, friends, boss, co-workers, neighbours, your barista, anyone…..encourage them to get involved and PLEDGE or PLAY during May/June in The Great Protein Challenge 2023! This is our major fundraiser and awareness campaign of the year. Registrations are now open thegreatproteinchallenge.com.au
Who will take on the challenge to see if they can eat under 10g of protein for only one day.
All funds raised go towards programs, resources and research to support all Australians’ living with an IEM to lead a life of full potential.
#howlowprocanyougo #lowpro #thegreatproteinchallenge
SAVE THE DATE - 2023 National Family Retreat
After the huge success of last years Retreat at the beautiful Sanctuary Cove in Queensland, we can now officially confirm that we are returning in 2023!
We are still finalising details and are hoping to open registrations VERY SOON so make sure you keep an eye out 👀
MDDA will also be offering hugely discounted extension packages for anyone interested in a pre or post Retreat holiday in the sun, so start planning your family vacay today.
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 benefit payment under the Inborn Errors of Metabolism (IEM) program has begun. If you have received a letter from the Department advising that you have an overdue reapplication you must act now. The IEM programme office are happy to take calls from anyone who had received a letter to explain to them what is required or you may direct any enquiries to MDDA. It is a requirement of the IEM program that clients with dihydropteridine reductase, hyperphenylalaninemia or phenylketonuria are reassessed by their metabolic specialist and submit a reapplication form (Form A) every 12 months. Your monthly benefit payments may be suspended if the Department does not receive your reapplication form every year. The reapplication form (Form A) can be found on the Department’s website at https://www.health.gov.au/initiatives-and-programs/inborn-errors-of-metabolism-program. MDDA are planning an information webinar later in March with the Department for IEM grant recipients providing an opportunity to hear directly from the Department.
Today is Rare Disease Day!
Rare Disease Day takes place on the last day of February, the rarest day of the year! MDDA joins rare disease groups from across the world to celebrate International Rare Disease Day! This important international campaign aims to raise awareness amongst the public and decision makers about rare diseases and their impact on patients’ lives.
MDDA celebrates all of those who live with a rare disease. We are committed to improve understanding and awareness of all rare diseases and will continue to advocate for research and better treatment and support of all IEMs.
#RareDiseaseDay #ShareYourColours #MDDA
More information about Rare Disease Day can be found at rarediseaseday.org
With the Summer holiday fun coming to a close, for many of our IEM families it means time to get ready for another school year! This can be a time of both anticipation and excitement, and if it is the first time your child will spend long periods of time out of your care, some concern. With pre-planning, children with PKU/IEMs can easily make this transition and keep their PKU/IEM well controlled. Over the years our supportive IEM community have shared invaluable tips, advice, and FAQ’s that the MDDA have pulled together to create an online “School Starter” resource which you can access here! https://mdda.org.au/school-starters/
IMPORTANT INFORMATION ABOUT THE IEM FOOD GRANT
The Department of Health and Aged Care (the Department) will be undertaking a review of clients who receive a monthly benefit payment under the Inborn Errors of Metabolism (IEM) program. The review will focus on ensuring client contact details are current and that Program reapplication requirements are met. The Department has informed the MDDA that clients with overdue reapplications will be contacted early in 2023 in regard to their reapplication.
It is a requirement of the IEM program that clients with dihydropteridine reductase, hyperphenylalaninemia or phenylketonuria are reassessed by their metabolic specialist and submit a reapplication form (Form A) every 12 months.
If you are aware that you have an overdue reapplication you are encouraged to schedule an appointment with your metabolic specialist and submit your reapplication to the IEM Program Officer. Your monthly benefit payments may be suspended if the Department does not receive your reapplication form every year.
The reapplication form (Form A) can be found on the Department’s website at https://www.health.gov.au/initiatives-and-programs/inborn-errors-of-metabolism-program
We wish you a Merry Christmas and Happy New Year from everyone at the MDDA! 🎄
The MDDA Office is taking a break and will be closed 21 December 2022 and reopen 16 January 2023.
The office will operate for the remainder of January on limited working hours. Please send your enquires to [email protected]
THE RETREAT IS HERE!
Team MDDA touched down yesterday and you won’t believe how beautiful this venue is! It’s the perfect venue for us to come together after 3 years apart to share, learn and catch up. We have over 75 families coming, both new and familiar faces. If you aren’t coming this weekend stay tuned to our social media to catch a glimpse of all the action. We can’t wait!
#mddaretreat22
The Power of Advocacy a win for equitable treatment for the PKU Community.
Metabolic Dietary Disorders Association and PKUNSW Association are extremely pleased with the decision of the Pharmaceutical Benefits Advisory Committee (PBAC) to recommend the listing of Kuvan (sapropterin hydrochloride) on the Pharmaceutical Benefits Scheme (PBS) for all Australians living with phenylketonuria (PKU) who are responsive to this treatment. Whilst we are disappointed with the outcome that Palynziq was a rejection for listing on the PBS, we will continue to advocate on behalf of all eligible Australians with PKU for access to this treatment with the Australian Government.
To find out more visit our website or click the link in bio!
Team MDDA’s LowProHighTea!
Team MDDA chose 28th June for our mini LowProHighTea to raise further awareness and to pay tribute to the vision of those who have pioneered and expanded neonatal screening.
Our LowProHighTea consisted of delicious fruits, low pro cookies, cupcakes, biscuits and tea/coffee (with milk alternatives of course!). A combination of phe free and lower protein snacks!
Thank you to everyone who has pledged their support so far and donated to our Team. Donations are fully tax deductible! 100% of these funds support the MDDA to deliver a range of initiatives, advocacy, programs and support to all Australians living with an IEM.
Donate to Team MDDA here - https://thegreatproteinchallenge.com.au/donations/team-mdda/
#internationalpkuday #internationalneonatalscreeningday
MDDA is registered with the Australian Taxation Office as an Public Benevolent Institution. We are endorsed as a Deductible Gift Recipient (DGR). All donations over $2 are tax deductible.
Disclaimer: Information presented within this website is intended for general purposes only and should not be construed as advising on diagnosis or treatment of any medical condition, if you have interest in any of the foods or treatments contained within this website check first with a qualified health professional.
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In the spirit of reconciliation the Metabolic Dietary Disorders Association acknowledges the Traditional Custodians of country throughout Australia and their connections to land, sea and community. We pay our respect to their Elders part and present and extend that respect to all Aboriginal and Torres Strait Islander peoples today.