Rare Diseases in the Educational Field: Knowledge and Perceptions of Spanish Teachers

Int J Environ Res Public Health. 2022 May 16;19(10):6057. doi: 10.3390/ijerph19106057.


Background: Education plays a fundamental role in everyone's wellbeing. That means it is essential to provide quality inclusive activities to ensure equity and equality of opportunity in order to shape a cohesive, democratic, healthy society.

Methods: In this study we focus on how inclusive educational practice addresses students with rare diseases, looking at teachers' knowledge and opinions in this regard. A questionnaire was administered to 574 teachers who taught in various stages of non-university education to determine their knowledge and opinions about different dimensions: conceptualization, legislation, intervention, and diagnosis.

Results: The results suggested various ideas for improvement in pursuit of positive, real inclusion, such as the need to improve teachers' knowledge and understanding of these students' characteristics and potential, with widespread specific training being urgently needed.

Conclusions: in summary, students' rights to education without discrimination is a basic premise of an educational system, leading to the need for a complete educational response that allows each student to develop as a person.

Keywords: education; inclusion; knowledge and perception; rare disease; teachers.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Attitude
  • Curriculum
  • Educational Personnel*
  • Educational Status
  • Humans
  • Rare Diseases*

Grant support

The study was supported by the University of Castilla-La Mancha (UCLM).