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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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 […]
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: https://www.ann.org.au/allied-health-and-nursing-alliance-ahna/.
Our 2014 Annual Scientific Meeting was a huge success with close to 100 delegates attending, making this our biggest meeting yet! The meeting was held on the 27th and 28th March across The Royal Children’s Hospital and Murdoch Childrens Research Institute in Parkville, Melbourne. Thank you to all those who attended and presented. You all […]