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Neuromuscular Digital Resource Project

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The Muscular Dystrophy Foundation Australia (MDF) recently received an NDIA grant for the development of an online, integrated and accessible resource to strengthen the capacity and skills of Australians living with muscular dystrophy and neuromuscular conditions, their families and carers.

The Neuromuscular Digital Resource will essentially be a ‘one stop shop’ for Australians living with a neuromuscular condition, their families and carers to access the latest in medical research, condition information and support services. The Resource will be reliable, comprehensive, and simple to use and understand.

The neuromuscular community will provide valuable input into the content development, structure, look and feel of the Resource to ensure it meets the diverse needs of our community.

The ultimate outcome is for our community to be more connected and informed to make decisions about their own personal needs, through integration with specialist and mainstream services and support networks in their local area.

To our knowledge, this is the first resource of its kind to be built in Australia.

 

Timeframe

MDF will commence community consultation in March 2019. Development of the Resource will commence in May 2019 and the official launch is set for March 2020.

 

Key Outcomes

With the development of The Resource, Australians living with neuromuscular conditions will be more connected and informed to make decisions and choices. They will:

  • actively contribute to leading, shaping and influencing their own lives and wellbeing;
  • have increased opportunities for active participation and feelings of belonging in the community; and
  • be more integrated with specialist and mainstream services and support networks.

Their families, carers and those connected to them will be better equipped to support their needs. Service Providers and other stakeholder groups supporting the neuromuscular community will be better connected with opportunities for closer collaboration.

 

Community Consultation

In order for the Resource to meet the unique needs of the neuromuscular community, we are asking members of this community to participate in focus groups currently being undertaken around the country. The outcomes of these sessions will give a better understanding of what the community needs and wants from the system.

An online survey will also be made available mid-April for those who are unable to attend a focus group.

Sessions:

South Australia
Tuesday 5 March 10:30am-12pm
Tuesday 5 March 5:00pm-6:30pm
Muscular Dystrophy SA

New South Wales
Wednesday 13 March 10:00am-11:30am, 1:30pm-3:00pm
Muscular Dystrophy NSW

Western Australia
Tuesday 19 March 5:00pm-6.30pm
Wednesday 20 March 10:00am-11:30am
Muscular Dystrophy WA

Queensland
Wednesday 27 March 5:00pm-6:30pm
Thursday 28 March 11:00am-12:30pm
Grange Library

Tasmania
Thursday 4 April 10:30am-12:00pm, 5:00pm – 6.30pm
The Old Woolstore

Victoria
Tuesday 16 April 1:00pm-2:30pm, 5:00pm – 6.30pm
Citadines on Bourke