News

Consumer Research Survey - IVIg
If you would like to assist with the development of future resources for this valuable program, we are looking for people to share their experience of immunoglobulin treatments. Carers are also welcome to participate.
NPS MedicineWise is looking for people who have been prescribed immunoglobulins (antibodies) as part of their treatment to take part in a short survey online and/or an in-depth interview over the phone.

Management committee members as well as the regional co-ordinators, regularly suggest that people keep a diary of their symptoms, medications, lifestyle impacts etc. in preparation for their visits to the Doctor. 

In last month's newsletter, we advised that a new feature has been added to our podcast service whereby MGAQ Podcast subscribers would get an email when a new podcast was available. From this email, subscribers can just click and play that episode in their browser. One can also access all previous podcasts.

MGAQ Inc 30th Anniversary Celebration

Sunday, 13 June, 2021 – 10am

at Hornets Football Club, Graham Road, Carseldine

There is a new feature for our private podcasts.

Now, subscribers can get an email every time we publish a new episode.

Even better: Subscribers can listen to the episode in their web browser!

In response to the many and varied conversation from the MG Community in regard to the safety and considerations to be made in evaluating the suitability of the MG community for COVID vaccination, the MAA are indebted and extremely thankful to Associate Professor Stephen Reddel (neurologist), and also to those as listed by Dr Reddel, for bringing to us a highly informed discussion paper, inclusive of data, aimed to provide informed guidance on these many questions.

Your MAA Board have kept busy despite the pre-Christmas distractions. It was an unusual and challenging year in so many ways.

I would like to sincerely thank your committed MAA Board team for all their work during 2020 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.

There is much work looming for 2021 and many opportunities to be developed. I hope that readers will continue to keenly follow our efforts and offer support as they are able.

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.