HELP FOR YOU

Education & information

Alongside our services, we like to keep you updated with research and best practice information as we believe that knowledge is power. We hold a series of information sessions and evenings throughout the year that gives you the opportunity to hear the latest info, as well as meeting and speaking with researchers and health professionals in the neuromuscular field.

We’ll let you know about conferences and seminars organised by other providers too so you won’t miss a thing.

Community Organisation Presentations

We can also deliver tailored education sessions to your organisation. Depending on content, the session can be from 1 – 3 hours, and fees may apply. Information can include;

  • What is muscular dystrophy?

  • Types of muscular dystrophy and neuromuscular conditions

  • Management

  • Support services

For further information or to arrange a session please contact Piper.

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SAVE OUR SONS DUCHENNE FOUNDATION 2019 ACTT NOW CONFERENCE

Three members of our team travelled to Sydney in September 2018 for the Save Our Sons Duchenne Foundation 2019 ACTT Now Conference. Over two days a vast array of national and international speakers presented the latest information on Duchenne management.

A highlight was international speaker Dr James Poysky from Baylor College of Medicine in the US, who gave informative presentations on various topics.

Many of the presentations, including Dr Poysky’s referenced the Best Practice Management Care Guidelines for DMD – a  family friendly version of which can be found here.

The full version of the guidelines can be found Part 1 - Part 2Part 3 (the newest edition, released in January 2018 which covers primary care, emergency management, psychosocial care and transition).

 

AN EVENING WITH RESEARCHERS

An Evening With Researchers bought together members of the Perth (WA) neuromuscular community to hear the latest respiratory health research in neuromuscular conditions. The Evening was held in conjunction with Telethon Kids Institute and Muscular Dystrophy WA. Click here to view the evenings presentations.