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Marfan syndrome in childhood: Parents’ perspectives of the impact on daily functioning of children, parents and family; a qualitative study
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Marfan syndrome (MFS) is a heritable connective tissue disease caused by a defect in FBN1. The diagnosis is based on the revised Ghent criteria. The main features involve the cardiovascular, musculoskeletal, ophthalmic, pulmonary systems and facial features. | Marfan syndrome in childhood: Parents’ perspectives of the impact on daily functioning of children, parents and family; a qualitative study