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Stay up to date with the latest developments in myasthenia gravis research, advocacy, and community support. Explore news, events, and policy updates to stay informed and get involved.

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PBAC-Time-to-Act
It is time to act! The PBAC lists 4 new gMG treatments for consideration at the March 2025 meeting!

The Pharmaceutical Benefits Advisory Committee (PBAC) has published its agenda for March 2025 and there are 4 generalised Myasthenia Gravis (gMG) treatments for consideration. Two are resubmissions and the other two are new requests for PBS listings. You can see the full agenda here. The closing date for consumer comments is Wednesday, 29th January 2025. The MAA…

MAA-ECU
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
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…

MG and Work
An Invitation to participate in “MG and Work” survey

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 about the factors that support or hinder people with Myasthenia wanting to work.…

Closing-Soon-Alexion-gMG-Research
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
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…

Alexion-gMG-Research
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…

MAA-PBAC-Webinar-Featured-Image-Postponed
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.

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…