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CLOSING SOON! Market research on Generalized Myasthenia Gravis (gMG)
Help Shape the Future of gMG Care – Market Research Closing Soon! 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…
Do you receive regular IVIg?
The MAA asks – “Do you receive regular IVIg?” If so, this consumer engagement opportunity may be important to you. Please consider if you would like to have your say on the following scenario. Participants need to register prior to Monday October 21st to ensure a place. The online engagement exercise will comprise some individual reflection on…
Market research on Generalized Myasthenia Gravis (gMG)
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. Late last year Alexion asked several people living with MG…
POSTPONED: Myasthenia Alliance Australia PBAC Submission Update Webinar
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.
Myasthenia Alliance Australia PBAC Submission Update Webinar
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…
PBAC Decision: New MG Medications Not Recommended, But Advocacy Efforts Continue
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. Whilst…
Final Reminder – Partnering With Canada
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. “We…
Research Report
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. One current project is VALUE-Ig, which aims to generate evidence to inform the optimal…
Partnering With Canada
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. “We…
Gene Therapy for Congenital Myasthenia Syndrome – Webinar Invitation
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.…