Thanks to sponsorship from Rare Voices and MGAQ Inc., Susan White was able to accept a personal invitation from Nicole Millis, CEO of Rare Voices, to attend this luncheon. It was a fantastic opportunity to meet the full Rare Voices team, to see Nicole passionately advocating for people with a rare condition, to flag Myasthenia Gravis with interested Politicians and to experience the issues faced by others also managing a rare condition.

Registrations for the 3 August Brisbane-based event, have been coming in steadily, with conversation about and interest in the next Conference growing. Thank you to all those that have registered and paid!

Many people actively responded to MGAQ and MG NSW requests to apply promptly. As the MAA runs on an extremely low budget and our plans for this event are big, this really helps us manage commitments.

Recently there was a shortage of Mestinon and the MGAQ was pleased to be able to send alerts to members regarding this situation. SMS alerts are one of the many benefits of being a financial member of the MGAQ.

Via social media, we received many enquiries as to why some people received the alert and others didn’t.  Firstly you need to be financial, and secondly we need to have a mobile number for you otherwise we cannot…

The 2019 Myasthenia Gravis Conference is now confirmed for Saturday, 3 August and registrations are now being taken! The program will cover a range of special interest sessions along with the latest information about treatments for the many variations of Myasthenia Gravis. The cost is $90.00 per person for a full day (8.30am - 5pm) and includes morning tea, lunch and afternoon tea. Susan will happy to answer questions if you call 1800 802 568. Email

Reach out to your local Federal Member In support of a request for the drug Rituximab to be made available via the PBS for people with Myasthenia Gravis.

The MAA, supported by Dr Blum and others, has written in detail to Minister Hunt drawing to his attention the potential benefits of making Rituximab available via the PBS to people with Myasthenia Gravis and requesting that it be considered. Minister Hunt has written an initial response to this…

The MGAQ operates a closed Facebook page for the Myasthenia Gravis community of Australia and New Zealand, currently with 209 members.  The MGAQ Discussion Forum has been a great support for its members and we would like to give the same support to MG Carers, provided under the MGAQ banner. 

A new Facebook page for our Australian and New Zealand carers has been constructed.  The idea is to provide a place where carers can share their experiences…

Thank you to everyone who attended the MGAQ Christmas Function on Sunday,

9 December at the South Club, Mt Gravatt.

It was evident with the continuous chatter and smiling faces, that everyone enjoyed the atmosphere and food and the opportunity to share in the celebrations of the Christmas season.

Summary of article released by Nicole Millis, Chief Executive Officer, Rare Voices Australia

(MGAQ partner with Rare Voices Australia)

A lot can happen in a month! The Australian Government has committed to a National Rare Disease Framework.  While opening our recent National Rare Disease Summit, Minister Hunt announced the Government’s commitment to a National Rare Disease Framework, the development of which is to be…

12 noon, Saturday, 24 November,
The Avenues Hotel, 270 Kern Bros Drive, Kirwan

The management committee feels it is important for members from across the state to meet and chat with some of our committee.
Therefore, over a period of time, two members from the management committee will travel to each of the areas.
The regional co-ordinators will negotiate with the committee re the most suitable time of the year and these will be advertised…

Conversations with the 'eNID Project Working Group’ continued this month. MSBase confirm that their work is progressing as outlined in the Project Update included in the October newsletter. Confirmation regarding funding support from the Pharmaceutical Companies is still pending.

The MAA have indicated to the working group that we are committed to raising a further $45,000.00 as requested.
See below for an indication of our progress. 

For people interested in…