Dancing with the Invisible…

Dancing with the Invisible…

Hours

At 48, I had it all. My career was at an all-time high, travelling nationally andinternationally, I was meeting all my life goals. A mother, a grandmother, a wife, amanager, President of a volunteer organisation, Board member and Director for variousorganisations and a co-owner of a small business with my Husband. Life was perfect, Iwas…

Leveraging the Shared Learning’s of the Rare Disease Sector – 2024 National Rare Disease Summit Workshop Outputs
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Leveraging the Shared Learning’s of the Rare Disease Sector – 2024 National Rare Disease Summit Workshop Outputs

Hours

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’
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Trish Brown, ‘How to Build Our Resilience so that when Life gets Tough, we have reserves to draw on’

Hours

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…

World Myositis Day Resources

World Myositis Day Resources

Hours

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. In discussions arranged with the Federal…

Support group offers hope for those living with myositis
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Support group offers hope for those living with myositis

Hours

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
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‘Dame’ Val takes the challenge of myositis head on

Hours

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….

Ann’s Story
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Ann’s Story

Hours

Ann Reynolds has a remarkably practical and positive approach to her recent diagnosis of myositis and is now doing all she can to learn about it and share her story. “It’s what I’ve been dealt with, I can’t I do anything about it, but knowing there is support helps;’ she said. Ann had been having…