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PBAC submissions for Vyvgart® (efgartigimod alfa) for all Myasthenia Gravis patients
The Australian Myasthenia community have a once in a generation opportunity to support new treatments for generalised Myasthenia Gravis (gMG) which are listed on PBAC’s March 2025 agenda! The Myasthenia Alliance Australia (MAA) encourages Myasthenia patients and your carers or families/friends to consider making a personal submission highlighting your lived experience by 29 January 2025. Why? Because…
PBAC resubmissions for Ultomiris® (Ravulizumab) and Zilbrysq® (Zilucoplan) for all Myasthenia Gravis patients
The Australian Myasthenia community have a once in a generation opportunity to support new treatments for generalised Myasthenia Gravis (gMG) which are listed on PBAC’s March 2025 agenda! The Myasthenia Alliance Australia (MAA) encourages Myasthenia patients and your carers or families/friends to consider making a personal submission highlighting your lived experience by 29 January 2025. Why? Because…
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…
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? 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…
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! 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…
10 Years celebrating Advocacy, Research, and Unity
The MAA is proudly celebrating ten years with all our keen supporters by sharing a few words from the three founding members who have been an integral part of this wonderful decade of the alliance. Please do view the timeline included here. It reflects the key components of our history. We are sure that you…
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…