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Lifeline for Pompe disease patients

RCH clinicians have worked with the Australian Pompe Association, drug company Genzyme and the Federal government to achieve government-subsidised treatment for late-onset Pompe disease. 12-year-old patient Christian Rivera received his first infusion at the RCH last week. The federal government has listed the only registered treatment for Pompe disease, Myozyme (alglucosidase alfa), on the Life […]

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UCL Clinical Research Associates

UCL Institutes of Neurology and Child Health MRC Centre for Neuromuscular Diseases  CLINICAL RESEARCH ASSOCIATES X 3 An exciting opportunity for three Clinical Research Associates has arisen at the MRC Centre for Neuromuscular Diseases, UCL Institutes of Neurology and Child Health. The CRAs will have the opportunity to undertake experimental and/or clinical research in neuromuscular […]

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Development of Allied Health and Nursing Best Practice Guidelines for Duchenne muscular dystrophy

The development of the Duchenne muscular dystrophy clinical practice guideline is currently underway utilising an NHMRC guided process. In keeping with this process, a call for committee members to join the scientific steering group is now open. We would welcome your participation. The guideline development process involves a number of steps. As a snapshot, the […]

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Allied Health and Nursing Alliance (AHNA)

The Allied Health and Nursing Alliance (AHNA) has now been established! We are seeking new members to join our dynamic team to work towards providing one Australasian voice for the Allied Health and Nursing care and research of patients with neuromuscular disorders. Please visit our AHNA webpage for further details: http://www.ann.org.au/allied-health-and-nursing-alliance-ahna/.  

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