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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…
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…