Rare diseases and socio-educational dimension: a systematic review

Abstract

The article presents a systematic review on the socio-educational dimension of rare diseases in childhood and adolescence, a field that has been scarcely addressed compared to the predominant focus of biomedical research. The aim is to shed light on the difficulties of inclusion and learning faced by these students and to provide the basis for a transdisciplinary framework of action. To this end, the PRISMA method was applied, identifying an initial 368 documents, and after applying strict inclusion and exclusion criteria, 18 articles were selected. The studies were classified into six emergent categories: docents, family, community participation and intra- and inter-institutional coordination, school organisation and structure, barriers and facilitators, and school organisation. The main findings highlight that teachers play a crucial role in curricular adaptation; families experience significant emotional and economic burdens; school organisation and the availability of material and human resources largely determine inclusion; and community and technological supports, especially online networks, can act as facilitators of integration. The study concludes that addressing the needs of this population requires a global and coordinated approach among education, healthcare, and the community. Ultimately, the review underlines that rare diseases represent a socio-educational challenge that demands comprehensive and inclusive.