The MAA respectfully requests patient support in further telling the story of their experiences with all forms of Myasthenia. Please note, we are very pleased that this survey can be completed via a hardcopy option. Please call Libby on 0407 110 204 to arrange this.
We are very sorry but the planned MAA PBAC Update webinar, scheduled for Friday 11 October 2024, is postponed until further notice.
Please keep an eye on our emails, website, and social media to ensure you stay updated.
The Myasthenia Alliance Australia (MAA) Board invite the Myasthenia community of Australia to join the following webinar.
The Board thanks Alexion for facilitating this opportunity to understand more about the processes involved in achieving new treatment options.
You are invited to a Zoom webinar on Friday 11 October at 12pm (daylight saving time) to hear from the Alexion team about the recent Pharmaceutical Benefits Advisory Committee (PBAC) Submission outcome and to learn a bit more about the process itself.
Recently the Pharmaceutical Benefits Advisory Committee (PBAC) announced the outcome of their July Meeting. The MG community were keenly waiting to hear the PBAC Outcomes as two new medications, Raviluzimab and Zilucoplan, had been reviewed. Regrettably both medications received a ”Not Recommended” verdict. The PBAC did recognise the high clinical need for effective therapies for gMG.
19 {Aug}
Our MessaGes' August Newsletter is now published.
At the close of nominations for the MGAQ Management Committee, there were still THREE VACANT POSITIONS. To meet our legislative requirements, we MUST HAVE A SECRETARY. Also, two more management committee members are required.
05 {Aug}
The Myasthenia Alliance Australia (MAA) supports and promotes research that is specific to the experience of Myasthenia Gravis (MG) patients in Australia. But we would not be able to do this without the essential and valuable contribution of Australians with MG.
29 {Jul}
To Australians with Myasthenia, the following is a message from Dr Carolina Barnette-Tapia MD, PhD of Canada.
The MAA thank Australians for their interest in supporting this project. Responses will be welcomed until early September 2024. Information about the outcomes resulting from this research has been requested.
Disclosure information is provided after logging in.
The MAA first engaged with Amplo Biotechnologies at the 2019 Brisbane Conference. We are delighted to report that Patricio Sepulveda, CEO, is offering to share updated information on “what they are doing and where they are at”. Patricio reports that 35 different genes have now been identified to capture more people with Congenital Myasthenia Syndrome. This knowledge is important in providing the correct treatment. Patients, Clinicians and Carers are invited to attend the following information sessions.
27 {Jun}
Artistic Flair, Unforgettable Masterpieces by Hermen Pekel and Chris Searl.
Both artists have very generously removed their reserve price in support of Myasthenia patients.
Your chance to own a beautiful original artwork by these renowned Australian artists.
Don't be slow! Bidding closes 29th June
Please make a donation so that we can continue to provide support for Myasthenia Gravis in Queensland.
Make a Donation