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Why volunteer? Experiencing the MG Patient Advocacy Organisation (PAO) Summit is just one example!
In May this year, people who are both a patient and patient advocate or representative came together in Den Haag, in The Netherlands. We came from about 15 different countries. I had not met one of them before arriving there, and yet I felt immediately at home. Although we come from different countries with different…
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…
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…
New MAA Website Goes Live!
A major Myasthenia Alliance Australia (MAA) project spanning 18 months has now been achieved. Thank you to our volunteer Craig for his vision and commitment. Thank you also to our technical experts for the hours of work in creating this look, in carrying across content, for capturing the needs of our community and for much…
Success: Four new treatment options recommended for MG patients in Australia!
The Pharmaceutical Benefits Advisory Committee (PBAC) has published the outcomes from their March 2025 meeting. PBAC has recommended that all 4 new treatments for MG patients be listed on the Pharmaceutical Benefits Scheme (PBS). This is wonderful news for our patient community in Australia and it shows that our submissions and engagement with the assessment process were impactful…
Interested in Joining a Consumer Advisory Council?
What’s next? Alexion is responding to the findings of the recently issued Infographic (found below) by establishing a Consumer Advisory Council to guide the development of tools to improve how the healthcare system supports people living with gMG in Australia. SenateSHJ, a health communication and research agency, is supporting Alexion with this work. Would you be interested in…
Social, personal and professional Impacts highlighted in lived experience survey
Late last year, many people in our community participated in a survey conducted by Alexion Pharmaceuticals about the impact of generalised Myasthenia Gravis (gMG) on daily life and experiences with healthcare professionals. The survey found gMG has a significant impact on people’s social, personal and professional life with one in two retiring early. Restricted social life,…
Expanding Treatment Options – January 2025
Living with MG means navigating a complex treatment journey. While we’ve come a long way with effective therapies like steroids, immunosuppressants, IVIG, and surgery, not all patients respond the same way. New treatments aim to fill these gaps, providing more options and hope for people with this challenging condition. Whether you’re newly diagnosed or have…