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Educational needs of children with rare diseases and long-term home ventilation (SMARD1) - case study

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dc.contributor.author Kamyk-Wawryszuk, Agnieszka
dc.date.accessioned 2020-10-12T08:07:25Z
dc.date.available 2020-10-12T08:07:25Z
dc.date.issued 2020
dc.identifier.isbn 978-86-6203-139-6
dc.identifier.uri http://repozytorium.ukw.edu.pl//handle/item/7239
dc.description.abstract Diagnosing a child with a rare disease that involves acute respiratory distress dramatically changes his/ her educational situation. Therefore, it is important to determine the child’s educational needs which will help select an adequate teaching strategy. One of such diseases is Spinal Muscular Atrophy with Respiratory Distress Type 1 (SMARD1). In Poland, two children were diagnosed with it, whereas around the world there are over 60 cases. The study encompasses one boy with SMARD1. The purpose of the study was to describe the child’s educational needs, as well as to indicate which of them are related to the rare disease and which to respiratory distress that requires mechanical ventilation. Based on the performed study, it was concluded that not all educational needs related to the rare disease were present. On the other hand, all needs related to home ventilation were present. en_US
dc.language.iso en en_US
dc.publisher University of Belgrade – Faculty of Special Education and Rehabilitation en_US
dc.subject children with educational needs en_US
dc.subject Spinal Muscular Atrophy with Respiratory Distress Type 1 en_US
dc.subject rare disease en_US
dc.title Educational needs of children with rare diseases and long-term home ventilation (SMARD1) - case study en_US
dc.type Book chapter en_US


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