What is Juvenile Dermatomyositis: Looking Ahead
For families with a child with juvenile dermatomyositis, looking toward the future and hope.
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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…
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…
Where are the treatments for the two million Australians with a rare disease?
Sunday Extra with Julian Morrow It took Christine six years and many doctors visits before being diagnosed with Myositis – a rare muscle disease. Is genetic testing helping in the diagnosis of rare diseases? And what more can be done to develop therapies when the economic incentive for pharmaceutical companies is low? Christine Lowe –…
Accessing the NDIS Stephen Toole LAC Brotherhood of St Laurence
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Exercise Videos from the Myositis Discovery programme at the Perron Institute
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…
