Project DMD

Project DMD is a research project focused on exploring the journey to adulthood for young people with Duchenne Muscular Dystrophy (DMD). AHNA researcher Tegan Pinese is coordinating the project to better understand what living as an adult with DMD is like and how young people and their families can best be supported to plan and […]

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Update: evidence based guideline summary for FSHD

Getting the support you and your health profesionals need The Foundation is thrilled to release a range of educational toolkits for patients, GP’s and Allied Health Professionals. Our goal is to empower our community when championing for support within the medical world. In September 2015 FSHD Global convened a workshop of 13 leading international and Australian […]

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MyLifeMyVoice study

The MyLifeMyVoice study seeks to describe the current health and wellbeing of teenagers living with NMD in Australia and New Zealand, and explore what teenagers think and feel about engagement in their health care. This study involves a questionnaire that can be completed with the help of a study volunteer. A few teenagers are also […]

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EOI: CMT Guidelines Scientific Advisory Committee

Development of Best Practice Guidelines for paediatric Charcot-Marie-Tooth disease The development of best practice guidelines, focusing on the clinical management of children with Charcot-Marie-Tooth disease (CMT) is currently underway, utilising a National Health and Medical Research Council (NHMRC) guided process (http://www.nhmrc.gov.au/guidelines/search). A call for members to join the Scientific Advisory Committee is now open. We […]

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