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Recruitment request: SMA patient and family study

The Centre for Community-Driven Research (CCDR*) are partnering with SMA and MD organisations in Australia to conduct a study to understand the experience of those affected by SMA and their needs in relation to future treatment, support, care and information. This study will result in a report that we can all use for future advocacy […]

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UPDATE ON SMA RESEARCH AND TREATMENT- AUSTRALIA

There has been a lot of activity in the clinical trial space for spinal muscular atrophy in the last 2 years. Nusinersen is an antisense oligonucleotide, or a short synthetic stretch of nucleic acid, that is designed to specifically bind SMN2 transcripts and “correct” SMN2 gene expression. Two hospitals in Australia- the Royal Children’s Hospital […]

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1000 Norms Project Update

The 1000 Norms Project has again been featured in the media! To date, over 600 people have volunteered to be in the study. To find out more, watch this video where Professor Josh Burns explains the important meaning behind the project and how it can help patients with neuromuscular disorders. The researchers are still seeking […]

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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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