Educational Research and Reviews

  • Abbreviation: Educ. Res. Rev.
  • Language: English
  • ISSN: 1990-3839
  • DOI: 10.5897/ERR
  • Start Year: 2006
  • Published Articles: 2001

Full Length Research Paper

A systematic review of research into rare diseases in the educational sphere

Leire Darretxe*
  • Leire Darretxe*
  • Department of Didactic and School Organization, University College of Teacher Training, University of the Basque Country, Spain.
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Zurine Gaintza
  • Zurine Gaintza
  • Department of Didactic and School Organization, University College of Teacher Training, University of the Basque, Spain.
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Javier Monzon-Gonzalez
  • Javier Monzon-Gonzalez
  • Department of Didactic and School Organization, Faculty of Education, Philosophy and Anthropology, University of the Basque, Spain.
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  •  Received: 23 February 2017
  •  Accepted: 11 May 2017
  •  Published: 23 May 2017

Abstract

Rare diseases (RDs) represent a wide, varied group of illnesses characterised by their low prevalence among the population. Moreover, they can appear at any time of life, including in infancy. For this reason, the aim of this article was to review and analyse research in the field of education to find out what kind of educational response is offered by schools to pupils with RDs. The following databases were used to find the pertinent bibliography: Web of Science, Scopus, Education Database (Proquest) and Eric. After retrieving the publications included in this study, each paper was reviewed and analysed on the basis of what journal they were published in and their abstracts. Out of the 53 studies included, only six bore any relation to the school context. The results showed that while there are scientific papers on RDs, most of them are restricted to the medical sphere. It was therefore concluded that further research is needed in the field of education to advance in the schooling of pupils with RDs.

Key words: Rare diseases, inclusive education, school, systematic review.