Our resources heavily depend on the progress made by international bodies and other countries who have had major breakthroughs in the provision of care, treatment and support for persons with SMA and their families. Here is a selection of materials we strongly recommend for further reading.
2017 Standards of Care for Spinal Muscular Atrophy (SMA)
The clinical spectrum of Spinal Muscular Atrophy (SMA) means patients often require comprehensive, multi-disciplinary medical care. The first international guidelines to detail best standard of care (SOC) was published in 2007 entitled ‘Consenus statement for standards of care in spinal muscular atrophy’.
In 2016 a multidisciplinary committee of international experts worked to provide a two part updated Standards of care. The update addresses nine key areas of care, including new topics such as acute and emergency care, medications and the involvement of other organs. It provides guidance on the best possible supportive care and management in order to improve life expectancy and quality of life for people with SMA
Current Strategies & Future Approaches for the Care of SMA
A comprehensive presentation about the present understanding of SMA pathogenesis, treatments available and latest clinical trials of orphan drugs globally by Medscape LIVE!
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