Supporting those with an inherited metabolic disorder and their families so that they can thrive and live their best life.

🌍 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 ...

"Really opens up your eyes in a new light, not just doing it for my daughter but walking in her shoes. I`m glad I did it"

A great way to help #makesomenoiseforpku is to PLAY or PLEDGE in the Great Protein Challenge. The Challenge has now been extended into June so there is still time to play. Strive to eat under 10 grams of protein to help raise awareness and funds in support of people living with rare genetic metabolic (protein) disorders, which includes PKU.

You can either:
PLAY - Take part in the Challenge and play by yourself or sign up a team!
PLEDGE - Support who you know participating in the challenge by helping them reach their fundraising goal!

Take on the Challenge TODAY and see how #lowpro can you go! Visit thegreatproteinchallenge.com.au ...

It is important to us that our generous supporters know the real difference and the impact of their GREAT donation!
100% of every dollar donated to MDDA helps fund our Support Programs, Advocacy & Awareness and Research & Clinical Trial Initiatives!
PLAY or PLEDGE to show your support! 🍏 🙌 thegreatproteinchallenge.com.au ...

Member Story: River Yuan, PKU.

It was 12th July 2019, when the Yuan family welcomed a beautiful baby boy into their world. Following newborn screening River was diagnosed with PKU. Soon after, his parents found a ‘new best friend’ for River – a rare disease medication that was recently added to the PBAC known as Sapropterin or Kuvan – which was listed after much advocacy and hard work by patient advocate and support group MDDA.

Kuvan is currently only available to children in Australia, leaving our rare adult population with nothing other than an ‘impossible lifelong diet’ to help protect them from the toxic amino acids found in protein that harm their brain. There is no cure for PKU!

Our “Make Some Noise for PKU” campaign is about advocating for access to this same treatment (and all available treatments) for adults with PKU.

MDDA thanks everyone who has supported our PBAC submission to get access to life changing drug therapies for PKU adults and now that consumer comments have closed, we will continue the dialogue with PBAC in the lead up to the decision expected in August. We are hopeful that Adults will be provided with the same opportunity that is extended to children just like little River, whose life was put on a different path thanks to him being given the opportunity to respond to a treatment to help manage his PKU.

We will continue to #makesomenoiseforpku so that ALL treatments can be available to ALL people with PKU.

Read River’s story here- https://mdda.org.au/river-yuan/

To find out more visit https://mdda.org.au/makesomenoiseforpku ...