We were very pleased to have a guest speaker, Dr Thomas Khoo, a rheumatologist and researcher (affiliated with the Royal Adelaide Hospital, Flinders Medical Centre. Manchester Myositis Research Group and a PhD candidate at the University of Adelaide) whose work focuses on inflammatory myopathies and myositis-specific antibodies (MSAs) join us following our 2026 Annual General Meeting….
Being diagnosed with a rare and chronic illness can turn life upside down, particularly when the diagnosis comes after months of uncertainty, unanswered questions and declining health. In this deeply personal account, one of our members shares their journey with Immune-Mediated Necrotising Myopathy (IMNM), a rare form of myositis, from the first unexplained symptoms and…
Why Planning for the Future? Living with myositis can bring uncertainty, but planning ahead can provide reassurance, control and peace of mind.Planning for the future is about making sure your wishes are known, your loved ones are supported, and important decisions have already been considered if they are ever needed.
The Myositis Association – Australia undertakes various activities aiming at raising awareness of Myositis in the community. To mark World Myositis Day the MAA wrote to the office of the Prime Minister and each of the State and Territory leaders asking them to acknowledge World Myositis Day. As Myositis is a rare disease, it is…
Ian brings a wealth of physiotherapy experience form many years of practice and more recently Ian has been a key member of the Myositis Discovery Program and Inflammatory Myopathies Clinic at the Perron Institute in WA. UPDATE: Ian and the team from Myositis Discovery Programme, Murdoch University, Western Australia; and Perron Institute for Neurological and…
The Myositis Discovery Programme is a research group led by Prof Merrilee Needham, based at Murdoch University and the Perron Institute. Our aim is to improve health and outcomes for patients by increasing our understanding of myositis and investigating potential new therapies. Here is the latest Research Update.
This leading international clinical care and research Myositis conference is held biannually. Clinicians, scientists, patients and pharmaceutical/equipment companies from around the globe were present.Attendance by Australian researchers in Lisbon was impacted by the conflict in the Middle East. Fortunately, online presentations could be made and some Australian researchers also managed to attend by travelling through…
MAA members Kim Armstrong – Wood and Kerry Maclaurin attended and Kerry has kindly provided the following Conference Report.
Graeme Eggins is a retired foreign correspondent and magazine publisher has Inclusion Body Myositis (IBM). Please Note: Government policy is in a state of flux, and some of the requirement may change in future. He has kindly provided this detailed guide for use when considering the move to Residential High Care. Graeme lives in high…
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Geoff Corcoran from Victoria has put together this resource based upon his and experience of others when selecting a Power Wheelchair. It is intended to assist those with IBM to quickly get acquainted with many of the relevant issues when dealing with some of the practical challenges of living with IBM. It should help you to achieve…
Ian Cooper and the Team at the Perron Institute’s Myositis Discovery Programme in WA have put together 3 exercise videos designed to assist those with Myositis. Two of the videos focus on a range of hand exercises with the third video is a guide to exercising in water. Our thanks to the team, and in…
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![Gadgets, Aids and Tips to Simplify Our Lives [Updated Feb 2026]](https://myositis.org.au/wp-content/uploads/2022/04/Gadgets-Aidsr-768x495.jpg)
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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…
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…
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…
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…
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…
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…
