An Assessment of the Knowledge, Attitudes, and Practices of Patients and Families with Diagnoses of Hereditary Neuromuscular Disorders.

Abstract excerpt

BACKGROUND: Hereditary neuromuscular disorders (NMDs) result in progressive disability with no definitive disease modifying treatments. There is a delay in diagnosis, and lack of awareness among affected individuals about these disorders, which can affect quality of life of patients. OBJECTIVE: The aim of this study is to identify gaps in patient knowledge, factors affecting attitudes toward the diagnoses, and...

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