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[Updated Link] EXPERT INSIGHTS: Myasthenia Gravis and symptom assessment tools to improve outcomes
The Myasthenia Alliance Australia are delighted to announce an in-person event to be hosted in Brisbane on Monday September 15th from 12 midday. We thank Argenx for supporting this opportunity to hear from Dr Carlo Antozzi speaking on “Myasthenia Gravis and symptom assessment tools to improve outcomes”. This is a significant educational opportunity for patients…
You are not alone in your experiences!
The MAA captured some invaluable information about our community as a part of the webinar hosted in January 2025. The webinar heard from leading Specialists who explained the new treatments which are currently seeking PBS funding. This webinar can be viewed here. The information collected was incorporated into the MAA Submission to the PBAC. The…
Conversations continue for access to new treatments
We appreciate that it has been a couple of months since the Pharmaceutical Benefits Advisory Committee (PBAC) recommended that 4 new treatments for AChR+ generalised MG patients be listed on the Pharmaceutical Benefits Scheme (PBS)… In this time, the MAA has continued conversations with clinicians, government, and industry stakeholders to make sure we understand the progress…
A Decade of Progress and a Clear Vision for the Future
As the Myasthenia Alliance Australia (MAA) marks over ten years of advocacy, research, and awareness, our latest Achievements Poster offers a powerful snapshot of what a committed patient-led movement can accomplish. From grassroots fundraising to national policy impact, MAA’s journey is one of collaboration, determination, and progress. Since its inception in 2014 as a partnership…
OH MG with Chloe Wigg
Myasthenia Gravis Awareness Month went to a new level this year with the Oh MG Art Exhibition held at the Logan Art Gallery in Brisbane. The artist, Chloe Wigg, who also has MG, worked for several years to stage this wonderful exhibition which highlights MG as a snowflake condition. The use of Mestinon bottles also…
MGBase launch paper has been published and is online!
MGBase Launch Paper Now Published The MGBase registry launch paper is a landmark initiative bringing together deidentified clinical data from over 1,200 MG patients across 15 countries. Built on the proven MSBase platform, this collaborative research tool enables long-term insights into treatment outcomes, disease progression, and global variations in care. Backed by Myasthenia Alliance Australia,…
How Australians living with Myasthenia Gravis are shaping the future of MG treatment decisions
The VALUE-MG research team have provided an update on an important co-designed study that is looking at what people with MG value most when it comes to treatments. Thank you to all MG patients who have contributed to this research so far. Study Update: How Australians living with Myasthenia Gravis are shaping the future of…
Exploring Lived Experience of People with a Myasthenia Condition
The MAA has partnered with the Edith Cowan University to conduct research on exploring the lived experience of people living with Myasthenia Gravis. The research team is led by Associate Professor Christopher Kueh. Our project focuses on understanding the experiences of individuals living with Myasthenia Gravis (MG) in Australia. We want to know about the…
Proudly Supporting MGBase
The bold concept to have a physician captured, longitudinal data base reflecting real time evidence about treatment benefits for people with Myasthenia Gravis was first presented to the Myasthenia patient group in December 2016. The Myasthenia community committed to raising $40,000 to support this work. The project was known as eNID. At the 2017 Conference…
Framing the PBAC Submissions and why your participation has been impactful.
Thank you to everyone who joined us for the webinar about new treatments and Pharmaceutical Benefits Advisory Committee (PBAC) submissions, and to all of you who made a submission and shared your lived experience and treatment preferences as part of the PBAC process. The PBAC meeting takes place in March, and we will know the…