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MAA PBAC Webinar Featured Image
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
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…

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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
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…

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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…

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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.…

Make a submission to PBAC about a new complement inhibitor treatment, Zilucoplan

Make a submission to PBAC about a new complement inhibitor treatment, Zilucoplan

UPDATED – Participate in a focus group to help design research for MG patients

Participate in a focus group to help design research for MG patients

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Couch Consumer Research

Couch Consumer Research

Update – There is still time to make your submission to PBAC

There is still time to make your submission to PBAC