Archer’s Fundraiser Date: Saturday November 11, 2023Time: 12pm-3pm.Venue: Mt Gravatt Bowls Club, 1873 Logan Road, Upper Mt Gravatt, Qld 4122 Join us and be part of an enjoyable afternoon socialising […]
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/ ...
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!
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) ...
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.
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. ...
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 ...
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!
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 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/
"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 ...
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 ...
For most people the start of winter means enjoying afternoon treats like this! Unfortunately not for those with PKU/IEM 🙁 A small hot chocolate and a scone with jam and cream is more than double the protein allowance of those on a low protein diet! There is multiple ways to get involved in the Great Protein Challenge to help raise awareness for the individuals living with a protein IEM! EXTENDED INTO JUNE! -Sign up to PLAY -PLEDGE your support -Contact your local MP to take on the Challenge -Reach out to the media https://thegreatproteinchallenge.com.au/ #howlowcanyougo #greatproteinchallenge #lowpro ...
A big shout out to all our amazing players and teams taking on the Great Protein Challenge today! We are so grateful for your support and raising awareness for all those living with PKU/IEMS! 😁💪 The Great Protein Challenge is now running into June! It`s not too late to change your PLAY date, or sign up to take on the Challenge yourself! #howlowprocanyougo #thegreatproteinchallenge #lowpro thegreatproteinchallenge.com.au ...
The MDDA is supported by funding from the Australian Government under the Health Peak and Advisory Bodies Program. 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.
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.