Resources for the educational inclusion of students with rare diseases

This paper presents a study whose objective was to characterize the formative, hu-man, physical and community resources that make up good educational practices for the educational inclusion of students who suffer from a rare disease, as well as to detect the needs experienced by professionals and families regarding these resources. To this end, a cross-sectional and qualitative study was developed in which educational and health professionals, families and students with this type of pathology participated. The results suggest that educational, human, and community resources are considered key, and their orientation should focus on providing teachers with intervention strategies rather than on informing about these diseases. In addition, the existing human and physical resources are valued positively, although the need to expand them is pointed out, especially through the figure of education-al technical assistants. Physical resources and materials are considered sufficient, highlighting the role of traditional resources as a complement to ICT. Another central element mentioned by the participants is the coordination and interdisciplinarity involved in addressing the needs of these students. Finally, the implications of these results for the development of inclusive practices are discussed. Besides, the main limitations of the study are presented, as well as futures lines of intervention and re-search which support the educational and social inclusion of these students.