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Myo News

CamRARE Emergency Passport (Information Document/Card) – A very useful resource – UPDATE

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Since this information was published in December, MAA has now partnered with CamRARE and there is now a customised version of the rare patient passport available for download. Please do not distribute the passport file as CamRARE monitor downloads so they can understand and report on the reach of their work. The CamRARE ‘This is…
Read More CamRARE Emergency Passport (Information Document/Card) – A very useful resource – UPDATE

Do you intend to travel with an electric wheelchair, gas cylinder or similar?

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I regularly travel with my electric wheelchair and needed to get dangerous goods approval for the battery that powers the chair. I had to attend the special assistance help desk and seek dangerous goods approval for the battery – (quite an extensive process that is time consuming.) Tip – make sure you allow time for…
Read More Do you intend to travel with an electric wheelchair, gas cylinder or similar?

Follow up from the Myositis Discovery Programme’s Live and Local Events

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Thank you once again for your support of our Myositis Research Road trips this year. We finished up with our final session in Bunbury, WA.  Over the 9 events, we had around 400 attendees, which is amazing!  We are very grateful to all of our collaborators and colleagues who joined us as well. And of…
Read More Follow up from the Myositis Discovery Programme’s Live and Local Events

Myositis Discovery Program Live and Local recap

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Recently, the Myositis Discovery Programme (based in Perth) went “Live & Local” on a research road trip across Australia, with events in Adelaide, Brisbane, Melbourne, Bendigo, Sydney, the Central Coast, and Canberra. Thank you again to everyone that joined us and showed their support! We hope the experience was just as valuable to you as…
Read More Myositis Discovery Program Live and Local recap

Myositis Association Australia

The Myositis Association – Australia Inc is a registered charity, run by volunteers, who have Myositis.
We are here to support and advocate for you, whether you live with Myositis or you are a carer, family member, or friend.
Our goal is to help more people keep in touch, share their experiences and learn practical ways to manage their condition.
We also work to raise awareness of Myositis and to support Australian-based research looking into ways to prevent and treat the disease as well as improving the quality of life for those living with Myositis.

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Myo Journeys

While every person’s experience of Myositis is different, sharing stories helps those on a similar journey realise they are not alone. You’re never alone with us.

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What is Myositis?

Myositis is a group of rare conditions where the body’s immune system turns against itself and destroys healthy muscle instead of building new muscle tissue.
Over time, Myositis can cause significant muscle loss with comparable decline in strength, dexterity and mobility. In extreme cases, Myositis can be fatal when the heart and lung muscles are involved.

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Connect

Join us and connect to a strong network of support wherever you are in Australia.

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Get Support

Meet others who know what life is like with Myositis, at one of our group events, conferences or over the phone for a confidential chat.

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Know More

Learn more about Myositis and stay up-to-date with the latest health management tips and information on research and clinical trials.

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Get Involved

Help fund more Myositis research and support our education, awareness and advocacy work.

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Keep up to date with current news, events and fundraising opportunities!

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