Medical care for SMA patients has been standardised in an scientific publication entitled Consensus Statement for Standard of Care in Spinal Muscular Atrophy and published in 2007 in a leading academic journal Journal of Child Neurology.
Regrettably, not all doctors who care for SMA patients follow the Standards or even know of the existence of this document. This has resulted in patients with SMA, especially with its most severe form, receiving substandard care and sometimes not surviving it.
The publication can be downloaded here. Please share it with your doctors!
Currently, the Standards of Care are in the process of being updated by an international expert group supported by the SMA community and should be published shortly. A report of a recent meeting of the expert group can be read here.