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Parenting a child with Marfan syndrome

Warnink-Kavelaars, Jessica; van Oers, Hedy A.; Haverman, Lotte; Buizer, Annemieke I.; Alsem, Mattijs W.; Engelbert, Raoul H. H. (Lectoraat Fysiotherapie - Transitie Van Zorg Bij Complexe Patiënten); Menke, Leonie A.

Marfan syndrome (MFS) is a multisystemic, autosomal dominant connective tissue disorder that occurs de novo in 25%. In many families, parent and child(ren) are affected, which may increase distress in parents. To assess distress, 42 mothers (29% MFS) and 25 fathers (60% MFS) of 43 affected children, …

2021-01AlgemeenArtikel

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Parenting a child with Marfan syndrome

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