Rare diseases are a challenge to our society that requires interdisciplinary interventions to approach its impact on children and their families. This paper proposes an approach to rare diseases from perspective families of affected children and their teachers, to analyze their needs and generate joint reflection processes that impact the improvement of support services with access. For the conclusion of this paper, we interviewed fifteen families and eight teachers from several Spanish provinces. The results show that families require information and advice following diagnosis of the disease and that teachers need more training on classroom intervention in these cases. Caring for these children requires a multidisciplinary collaboration between medical teams, the educational community, and families, which will result in improving the comprehensive care they need.
Castro, A., & García-Ruiz, R. (2014). La escolarización de niños con
enfermedades raras. Visión de las familias y del profesorado. REICE. Revista Iberoamericana sobre Calidad, Eficacia y Cambio en Educación, 12(1),
Retrieved from: http://www.rinace.net/reice/numeros/arts/vol12num1/art8.pdf