Media
Today is International Rare Disease Day! 🌍💙
Every year, on the last day of February, the world comes together to shine a light on rare diseases. 300 million people worldwide live with a rare disease. 5% of the world population is affected by a rare disease. There are 6,000+ identified rare diseases. 72% of rare diseases are genetic.
Rare Disease Day is all about raising awareness, driving change, and ensuring those living with rare conditions get the recognition, support, fair access to diagnosis, treatment, care and opportunities they deserve. At MDDA, we stand with the entire rare disease community, advocating for greater understanding, research, and better care—especially for those we support with Inborn Errors of protein Metabolism (IEMs).
Let’s make stand together, spark conversations, and show our support! 🎗️💙
🔗 Learn more at rarediseaseday.org
#RareDiseaseDay #LightUpForRare #MDDA #PKU #MMA #OTC #MSUD #TYR #CIT1 #ASA #ARG #HCU #GA1
Every year, on the last day of February, the world comes together to shine a light on rare diseases. 300 million people worldwide live with a rare disease. 5% of the world population is affected by a rare disease. There are 6,000+ identified rare diseases. 72% of rare diseases are genetic.
Rare Disease Day is all about raising awareness, driving change, and ensuring those living with rare conditions get the recognition, support, fair access to diagnosis, treatment, care and opportunities they deserve. At MDDA, we stand with the entire rare disease community, advocating for greater understanding, research, and better care—especially for those we support with Inborn Errors of protein Metabolism (IEMs).
Let’s make stand together, spark conversations, and show our support! 🎗️💙
🔗 Learn more at rarediseaseday.org
#RareDiseaseDay #LightUpForRare #MDDA #PKU #MMA #OTC #MSUD #TYR #CIT1 #ASA #ARG #HCU #GA1
📢 Media Release Issued Today
We’ve released a media statement today to raise awareness for the IEM community and MMA families. By standing together, our collective advocacy drives meaningful change, pushing for better support, resources, and treatment options.
Clinical trials are critical to advancing research and improving care.
If you have any questions, please reach out to us at office@mdda.org.au.
#IEMCommunity #MMAFamilies #StrongerTogether #ClinicalTrialsMatter
We’ve released a media statement today to raise awareness for the IEM community and MMA families. By standing together, our collective advocacy drives meaningful change, pushing for better support, resources, and treatment options.
Clinical trials are critical to advancing research and improving care.
If you have any questions, please reach out to us at office@mdda.org.au.
#IEMCommunity #MMAFamilies #StrongerTogether #ClinicalTrialsMatter
🌟 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! 💙
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! 🌟
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! 🌟
We’re so excited to announce that we’ve been successful in receiving a 2024 CommBank Staff Foundation Community Grant! 🚀 This $20,000 grant is a huge boost for the work we’re doing to support the IEM community, and we’re incredibly grateful. Thank you to our member Andrew N for the nomination, we’re very grateful. Big thanks to the CommBank team who make this possible through Workplace Giving—you’re making a real difference!
#commbanklife #MDDA
@CommonwealthBank
#commbanklife #MDDA
@CommonwealthBank
🌟 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
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
