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Gadgets, Aids and Tips to Simplify Our Lives [Updated Feb 2026]
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CamRARE Emergency Passport (Information Document/Card) – A very useful resource – UPDATE
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…
Do you intend to travel with an electric wheelchair, gas cylinder or similar?
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…
Follow up from the Myositis Discovery Programme’s Live and Local Events
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…
Myositis Discovery Program Live and Local recap
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…
Keeping in Touch Newsletters
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World Myositis Day Resources
World Myositis Day had its foundations in the USA some years ago. Over the last few years, there’s been a collaborative effort by groups around the world: from USA, UK, Netherlands, Germany, Sweden, Norway, Czech Republic, France, Poland, India and Australia to recognise World Myositis Day on 21st September. World Myositis Day 2025, observed on…
Your patient has Myositis
Most Myositis patients are at risk of falling. They cannot get up from the floor, may have trouble getting out of any chair; have difficulty with even a few steps; have very weak shoulders and grip; have swallowing or serious lung issues, and will not tolerate normal repetitive exercise. Be patient and proceed slowly. Take…
Myositis month presented an opportunity to reflect
LAST month was dedicated to raising awareness of a progressive, currently incurable and poorly treated group of rare conditions commonly known as Myositis. Myositis is the term used to describe inflammation of the muscles, and has a number of different forms. The majority suffer from Inclusion Body Myositis (IBM) for which there is no cure…
Living the Research: Exploring What Truly matters to Myositis Patients
This is a three-part series of articles from Dr. Kevin Austin, Adjunct Professor in the Health Futures Institute’s Personalized Medicine Centre in Murdoch University, Australia. Kevin lives with IBM and conducted this patient-led research study to understand the priorities of those living with myositis and their care partners. This research and survey were partly funded…
May is Myositis Awareness Month
Globally this month is dedicated to raising awareness of this progressive, currently incurable and poorly treated group of rare conditions. This is a time to come together for patients and carers battling this disease, as well as an opportunity to educate the public on this group of extremely rare conditions. Nationwide, Myositis patients, their families…
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Discussion of Changes to the NDIS
Stephen Toole, a Local Area Coordinator from the Brotherhood of St Laurence, a community partner to NDIS, answers a range of member questions relating to recent changes to the NDIS. This video was recorded on 4th April 2025. The slides Stephen refers to in his presentation are available here This video is not to be…
NDIS Changes Q & A – Slides
Following discussions at a number of Keeping In Touch meetings, members were asked to submit questions related to the recent changes to the NDIS. Stephen Toole, a Local Area Coordinator with the Brotherhood of St Laurence, who is a community partner with NDIS, joined us in a ZOOM meeting on 4th April 2025. A video…
Determining patient and carer priorities in Inclusion Body Myositis a patient-led research study
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Leveraging the Shared Learning’s of the Rare Disease Sector – 2024 National Rare Disease Summit Workshop Outputs
Our President Christine Lowe has passed on the Workshop Outputs from the recent Rare Voices Australia Summit. Our Association was represented by Christine and our RVA ambassadors Lachy Beckett and Katie Alexander.
Trish Brown, ‘How to Build Our Resilience so that when Life gets Tough, we have reserves to draw on’
Trish has a counselling background having worked as a social worker in hospitals and community health for 40 years. Her work included counselling for anxiety, depression, trauma and loss and grief both with individuals and with families. Trish is also our NSW Coordinator. Much of her experience in hospital settings was with people who had…
Current State of Myositis Understanding. Ian Cooper from the Myositis Discovery Programme
Ian Cooper, Physiotherapist in the Myositis Discovery Programme (MDP) shares his thoughts and experiences from attending Global Conference on Myositis held in Pittsburgh, USA.
Support group offers hope for those living with myositis
Published in Shepparton News June 14, 2024 With incurable diseases such as myositis, taking care of one’s mind is most important. Having a solid support system of people who have been through something similar, who understand and can help you prepare, is a massive part of that. Myositis is a rare disease where the body’s…
‘Dame’ Val takes the challenge of myositis head on
Val Dempsey… “Somebody will walk over to you and say: ‘How are you today, Val?’ And likely if you tell them, they don’t ask again.” Photo: Katarina Lloyd Jones. Myositis refers to a group of rare, incurable and progressive conditions that sees the body’s immune system turn against itself, destroying healthy muscle in the process….
