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A new treatment for AChR+ generalised MG, Zilucoplan (brand name Zilbrysq ®) is on the agenda for the next Pharmaceutical Benefits Advisory Committee (PBAC) meeting.

The MAA is working with Monash University researchers on the VALUE-Ig project. We are looking for MG patients to participate in a focus group to help design a study about patient preferences on treatments. This is an opportunity to provide input before the research is carried out and we invite you to take part.

 

Our Guest Speaker for the June Awareness Function is

DARE your friends and family to CARE about making a difference for people with Myasthenia Gravis.

You are the difference that drives us!

The Myasthenia Alliance Australia (MAA) is very proud to continue the good work occurring with International June MG Awareness Month and delight in announcing the launch of an Australia wide “Art With Heart” Auction in support of our condition. This has been a major undertaking of the MAA with its second year running.

Dear Myasthenia Gravis Community,

Dear MG Community,

You hopefully received recent communication from the Myasthenia Alliance Australia (MAA) about the current opportunity to make a submission to the Pharmaceutical Benefits Advisory Committee (PBAC) for a new treatment called Ravulizumab.

Dear MG Community, 

The Myasthenia Alliance Australia (MAA) is sharing the attached information with you about the current opportunity to make a personal submission to the Pharmaceutical Benefits Advisory Committee (PBAC) about a new treatment called Ravulizumab. The deadline for submissions is 31 January 2024 and we will share more information in the new year. 

May we also take this opportunity to wish you a safe, happy, and relaxing festive season and we look forward to continue supporting you and being in touch in 2024. 

The MAA are proud to announce that the Patient Reported Outcomes Study, which was strongly supported by the Australian Myasthenia community, is now referenced via an article in the Journal of Clinical Neurosciences - Clinical features, treatments, their impact, and Quality of Life for Myasthenia Gravis patients in Australia.

We congratulate the researchers Janet Sansoni, Nidhi Menon, Lachlan Viali, Susan White and Steve Vucic for their contribution of significant time and much diligence which has resulted in this comprehensive and impactful document.

Registrations for the MAA October 21st 2023 Conference to be held in Sydney are now rising steadily with representation coming from every State and Territory (except NT so far) and also New Zealand.

Registrations are now open for the 2023 Myasthenia Gravis Conference, to be held at the
Concord Hospital Education Centre, Sydney on
Saturday October 21 2023 

9.00am to 4.30pm

The Registration Pack (which includes the Registration Form) can be downloaded from MAA Conference 2023 - Registration Pack

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