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MAA Celebrates 4 Years

Posted on Wednesday, 29 August 2018
4 July, 2014, the NSW Association for people with Myasthenia Gravis agreed to join with the Myasthenia Gravis Association of Queensland to form a National Alliance for Australians with a myasthenic condition. Congratulations to those initial members involved in making this commitment. 
The Associations are State registered entities and identify with State Regulations and Health Authorities. Prior to this day, there was no pathway for these Associations to have any influence, conversation or financial request on items under the jurisdiction of the Federal Government. 
It was for this reason that a legal Alliance Agreement was drafted. Any State Incorporated Association in Australia is welcome to join this Alliance and support giving a voice to all Australians with Myasthenia. 
When the Committee first met we could not foresee all the projects and possibilities for bringing benefits to Australians. In only four years, two very successful conferences have been hosted, effective communication is in place with our International counterparts, monies requested for a specified research project were raised, a regular Alert communication system has been established, a working relationship with Rare Voices has been created and much more! 
There are several new projects currently on the go. (More about this next month!)
These projects do however include preparations for a conference in 2019 and investigating how we can bring influence in making the drug Rituximab/MabThera more equitably available to all Australians. 
The returned questionnaires have been invaluable in the information gathering process. Thank you to everyone who has contributed. There is still time to respond. Actions are underway but it won’t be a quick process - nor a certain one.
Susan - MAA President.