News

Dear Myasthenia Gravis Community,

Looking back I realise just how much time has slipped away since I last wrote to you. Thank you for your patience and understanding, and hopefully your excitement as the constant stream of newsfeeds has flowed during this period. The MAA has not been idle and it is hard to know where to start in summarising the previous two years!

Most people have never heard of myasthenia gravis.

And for those living with it, that lack of awareness can make everyday life harder than it needs to be.

It can mean delays in diagnosis.
Limited access to the right care.
And a constant need to explain a condition that isn’t always visible to others.

For many, the hardest part isn’t just managing the condition itself. It’s navigating a world that doesn’t yet understand it.

A Simple Way to Start the Conversation

As an active and focused member of Neurological Alliance Australia (NAA), the MAA is supporting the NAA's first national survey examining gaps in neurological care, support, research and identifying innovation across Australia. 

The good news keeps coming! Zilbrysq (zilucoplan) has been listed on the Pharmaceutical Benefits Scheme (PBS) for generalised Myasthenia Gravis (gMG) patients who are AChR antibody positive.*

WE NEED YOUR HELP

You can help raise awareness about how heat and hot weather affect people living with myasthenia gravis.

Don’t hesitate one more minute!

Register here for the Myasthenia Alliance Australia (MAA) Integrating Physiotherapy into Your Care Team with Physiotherapist Rodney Wenceslao.

Register here for the Myasthenia Alliance Australia (MAA) Integrating Physiotherapy into Your Care Team with Physiotherapist Rodney Wenceslao.

Generalised Myasthenia Gravis (gMG) patients can now have access to a new targeted therapy Ultomiris, via the Pharmaceutical Benefits Scheme (PBS), broadening our treatment options.*

The MAA shared the important moment when Minister Butler announced that this new treatment has been listed, at the annual Rare Disease Day parliamentary event.