UPDATE: On Friday 19th August, State Premiers, Territory Chief Ministers and Disability Ministers attended the Council of Australian Governments (COAG) meeting in Canberra, and the NDIS was high on the agenda. Below is the joint media release from the Prime Minister’s office (visit the Every Australian Counts website for more information). Prime Minister – Joint […]
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17th International Congress of the World Muscle Society 9-13 October 2012 Perth, Australia The Annual Congress of the World Muscle Society is being held in Perth Western Australia in 2012 (October 9th – 13th). This is an outstanding opportunity for everyone in Australia in the neuromuscular diseases community to listen to and meet many of […]
The global FKRP patient registry The International Registry for patients with FKRP mutations was officially launched on 1st March 2011. The registry is a patient initiated registry and designed for patients with LGMD2I, MDC1C or other conditions caused by a mutation in the FKRP gene. The FKRP registry is aimed at both, collecting data for […]
Title: Australian National Duchenne Muscular Dystrophy Registry Description:The availability of health information via the internet has become a critical resource for clinicians, researchers and affected families. Parents and advocacy groups have also become increasingly aware of international registries that provide opportunities for children to access new therapies through clinical trials. In Australia, Duchenne muscular dystrophy […]
Our goal is to ensure excellence in diagnostic methods and clinical management, and equal access to clinical trials and new therapies, for all individuals in Australia and New Zealand affected by neuromuscular disorders.
We can achieve our vision by establishing a cohesive, integrated neuromuscular network which enables people to work together across Australia and New Zealand, for the well-being of patients.