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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…
RESEARCH SUCCESS! Doctor Siriratnam shares his appreciation.
People may recall completing a survey way back in mid-2022 when researcher Dr Pakeeran Siriratnam was keen to understand more about our Covid experiences. He was delighted when 229 people successfully responded. After much time and effort Dr Sisriratnam’s paper was published in a prominent journal just prior to Christmas. He has responded to the…
Last Chance to Participate
Last opportunity to participate in MG and Work survey – closing 17thFebruary 2025 The MAA has partnered with the University of the Sunshine Coast to conduct research on Myasthenia Gravis and people’s ability to work. The research team is led by Dr. Michele Verdonck. MG can significantly affect people’s ability to work. Little is understood…
PBAC submissions for Rystiggo® (Rozanolixizumab) for all Myasthenia Gravis patients
The Australian Myasthenia community have a once in a generation opportunity to support new treatments for generalised Myasthenia Gravis (gMG) which are listed on PBAC’s March 2025 agenda! The Myasthenia Alliance Australia (MAA) encourages Myasthenia patients and your carers or families/friends to consider making a personal submission highlighting your lived experience by 29 January 2025.…
PBAC submissions for Vyvgart® (efgartigimod alfa) for all Myasthenia Gravis patients
The Australian Myasthenia community have a once in a generation opportunity to support new treatments for generalised Myasthenia Gravis (gMG) which are listed on PBAC’s March 2025 agenda! The Myasthenia Alliance Australia (MAA) encourages Myasthenia patients and your carers or families/friends to consider making a personal submission highlighting your lived experience by 29 January 2025. Why? Because…
Coming in the New Year – exciting new research opportunity!
The MAA and Edith Cowan University are collaborating to explore the health journey of people with MG from diagnosis through to living with the condition. Online workshops will be conducted to understand people’s experiences of living with MG.
HTA and PBAC? What/who are they and what does it mean for us?
You may be hearing more about HTA and PBAC from the MAA and among MG patient chats and meetings. You may have made your submission about new treatments for MG earlier this year, or you may generally follow updates about new treatments and how they come to be available to us in Australia. But what…