News

Administered by the Myasthenia Gravis Association of Queensland Inc.

The Myasthenia Gravis Australia Parents & Grandparents Facebook page has been established for Parents and Grandparents of children (under 25 years old) diagnosed with Myasthenia Gravis.

In our February Newsletter, we talked about a new Podcast service for 2020 targeted to further improve members knowledge and understanding of matters related to their Myasthenia Gravis (MG). One of the podcast series is entitled ‘Ask the Expert’.

This Series allows members to ask general questions about MG, its impact and how to better cope, the various types of treatment options, etc. These questions will be incorporated into a recorded discussion with a relevant expert and from the recording, a podcast will be produced for distribution to members.

As people with a chronic illness, particularly inclusive of those who are immune suppressed, the Myasthenia Gravis community should be very familiar with the precautions needed to stay safe from infections. With the COVID-19 virus spreading it is important for patients and their families to be extra vigilant. This includes:

The booklet “MG Xplained” is a wonderful resource that has been uploaded to the MGAQ website.  This resource was not produced by the MGAQ, but we were very lucky that CSL Behring sponsored the production of this very user-friendly, easily understood explanation of Myasthenia Gravis.  We wish to thank CSL for this wonderful support of such a worthwhile project.  The association also acknowledges the work of Dr Stefan Blum, who advised throughout the writing and production to ensure that all the information contained within was accurate and relevant.

Rare Disease Day takes place on the last day of February each year, this year being 29 February, with the main objective to raise awareness among the general public and decision-makers about rare diseases and their impact on people’s lives. Organised by Rare Voices Australia.

The Drugs to be Used With Caution information has been formatted into a wallet card containing members personal details as requested. This item will replace the previous Medi-Alert Card.

The online application can be found at: https://mgaq.org.au/request-for-medi-alert-card

An application form will be included with this newsletter or can be downloaded at anytime from the website:

Susan White, MAA President, is delighted to be attending the Parliamentary Event to be held in Canberra, on Wednesday, February 26th in celebration of Rare Diseases Day. Dr Mike Freelander MP, Mr Trent Zimmerman MP and Rare Voices Australia will host the day. Health Minister, Greg Hunt, is to launch the National Strategic Action Plan for Rare Diseases. It will be a significant day.

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Consistent with its Rules the MGAQ, through its Management Committee, has always had a focus on growing the benefits available to its member community.

One of its present projects, which shall be released progressively through 2020 and beyond, involves the production of a group of audio and video podcast series. The project targets enhancing the knowledge and awareness of MGAQ members about myasthenia gravis (MG) and on approaches for how best to live with MG.

Susan White, MAA President, is delighted to be attending the Parliamentary Event to be held in Canberra, on Wednesday, February 26th in celebration of Rare Diseases Day. Dr Mike Freelander MP, Mr Trent Zimmerman MP and Rare Voices Australia will host the day. Health Minister, Greg Hunt, is to launch the National Strategic Action Plan for Rare Diseases. It will be a significant day.