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Since the original Consensus Statement for Standard of Care in Spinal Muscular Atrophy was first published in 2007, medicine and science has made tremendous progress. In 2015–2017, a team of 64 experts reviewed the existing knowledge and clinical practice and developed an upated version of the Standard of Care.

The work carries a simple title Diagnosis and management of spinal muscular atrophy and was published in the respected medical journal Neuromuscular Disorders in early 2018 as two parts:

PART 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care

Download Standard of Care Part 1

PART 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics

Download Standard of Care Part 2

We strive that these medical guidelines are accepted and followed by all the doctors who care for patients with spinal muscular atrophy.

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