News

With the support of Terumo BCT, a tailored public affairs toolkit has been developed entitled “How can patient organisations ensure their voices are heard in public policy?” The aim is to help Australian patients in their advocacy efforts. This toolkit contains practical and easy-to-follow steps to facilitate outreach activities and discussions with public stakeholders.

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In the latest partner event with Rare Voices Australia, the MAA has participated in a forum to discuss how the NDIS is functioning for people with rare disease. NDIS Assistant Directors for Community Engagement attended the meeting which was chaired by RVA CEO, Nicole Millis. The directors took notes and asked many questions.

A wide range of informative videos, Podcasts, and Journal items can now be accessed by visiting the “members only” section of the MGAQ website at

www.mgaq.org.au/members-only

All members will need a username and password to login and access the members only pages. 

The Myasthenia Alliance Board are seeking out Victorians who access Therapeutic Plasma Exchange as a regular or intermittent treatment option to help them better understand patient experiences. This is in preparation for a workshop we have been invited to attend.

If you can help, please call Susan on 1800 802 568.

Covid-19 Vaccination Questions?

The MAA Medical Advisory Board have issued the following advice for people with Myasthenia who have questions about the Covid vaccinations currently being discussed.

Your MAA Board have kept busy despite the pre-Christmas distractions. It has been an unusual and challenging year in so many ways and embracing the joy and connection of the Christmas period feels more important than ever.

I would like to sincerely thank your committed MAA Board team for all their work this year and for the support they have provided to me as we have explored and embraced the opportunities to improve the lives of those across Australia affected by MG in all its forms.

In 2021, the MGAQ will celebrate 30 years supporting people with Myasthenia Gravis in Queensland as a volunteer Association.

As part of our celebrations, we are offering our younger people a competition to help raise awareness by telling a story about their journey with MG.

MY MG JOURNEY

The competition is open to three age categories

Closed SLACK Community open to MG Sufferers aged 18-35 only

•  Specially created to meet the needs of this younger group who are thinking about careers, relationships, making a family, travelling etc.

•  Discussion to be guided by the participants and supported by the Doctors.

•  Find this group via the mgaq.org.au home page and look for the link under SOCIAL INTERACTION

(S.E. Queensland ONLY to respond)

Potential Clinical Trial - Might you be a suitable candidate?

TAKE THIS 1 MINUTE SURVEY TO FIND OUT!

Question 1. Do you have AChR+, mild to moderate Myasthenia Gravis and your regular treatments DO NOT include IVIg or PLEX.

What is the latest on the quest to have more equitable access to Rituximab by seeking inclusion of this medication on the PBS for people with Myasthenia?
s discussed regularly throughout newsletters during the past two years, we have approached the Federal Government and the supporting authorities in regard to making Rituximab available to people with Myasthenia via the PBS. Our respectful and well considered approaches have resonated with the Government and with the Rare Voices Australia (RVA) organisation.