The Myasthenia Gravis Associations of Australia have come together under a National Myasthenia Alliance to enhance the support already offered to Australians suffering from the neurological auto-immune conditions categorised under the term ‘Myasthenia’.
The Alliance will provide a strong and unified voice for Myasthenia sufferers by generating more awareness of, and further interest in, these conditions. Through contact with Federal organisations, departments and individuals and by providing a point of contact for Australians from every state and territory, the Alliance provides a targeted forum with items of national importance. The Alliance will enhance the work done by the State Associations.
News and Events
The MAA is now part of the eNID Project Working Group and being kept up to date with progress. Technical Build options are currently being progressed with a view to a 17 week build process being undertaken early in the new year. Our community has been asked to commit a further $45,000.00 to this stage. The Alliance has agreed in principal should planned targets be met. More news will follow.
It is now confirmed that the MAA will host a 2019 conference in Brisbane on Saturday July 13th at the TRI Facility on the grounds of the PA Hospital. Details unfolding. Register your interest by emailing email@example.com or call 1800 802 568. This is a special and unique opportunity and it is hoped it will be well supported. Anyone interested in Myasthenia is welcome.
The letter requesting support in applying for Rituximab treatment in Myasthenia to be included on the PBS has gone to Minister Hunt. Rare Voices CEO, Nicole Millis, will be supporting this initiative also. We request that you make an appointment with your local member to raise awareness of the current community inequity that exists and the practical need to make key drugs more accessible to people with rare disease. Call Susan on 1800 802 568 for additional details.