We, the Myasthenia Gravis Community of Australia, supported by the volunteers of the Myasthenia Alliance (MAA) need a SOLD OUT National Conference this October.
The Conference will discuss-
- new information about the condition,
- the additional treatments becoming available
- why a greater range and new variety of treatment options are needed for managing a lifetime with this condition,
- how the health system might give better support,
- why being well informed makes for effective advocacy for both the individual and also for the entire myasthenia community.
Rituximab has been utilised for myasthenia patients for more than ten years yet it only become available to all patients from September last year. This change was a direct result of the advocacy undertaken by the MAA and the willingness of Greg Hunt MP, Health Minister, to support a rare disease patient group. To succeed it required unique legislative change.
New medications for Myasthenia are promised for Australians and these will be discussed at the Conference. Indications are that some of these treatments will be very expensive. Unless a PBS listing is achieved, once again there is a good chance that they will be accessed by a limited number of patients and sometimes at great personal expense.
We need to send a strong message to the Specialist Doctors, the Health Minister, Government Departments and the Pharmaceutical Companies that equality in care is of utmost importance.
We need to be prepared!
We need to begin these conversations now!
We can do this by having a full house at the Conference.
Please register now or send a family representative to take advantage of this important day.
Registration details can be found here myastheniaalliance.org.au/mg-
Susan White (MAA Chairperson), Carol Buchanan (MGAQ President) and Natalie Windle (MGNSW President)