RT info:eu-repo/semantics/article
T1 Rare diseases and socio-educational dimension: a systematic review
A1 Obregón, Lilian Johanna
A1 Coca, Juan Romay
A1 Gómez, Nicolás Plaza
A1 Redondo, Susana Gómez
K1 Educación inclusiva
K1 Enfermedades raras
K1 Atención a la diversidad
K1 Necesidades educativas específicas
K1 Inclusive education
K1 Rare diseases
K1 Diversity in education
K1 Special educational needs
K1 Rare disease
K1 inclusive education
K1 socio-educational dimension
K1 inter-institutional coordination
K1 5802.05 Educación especial
K1 3212 Salud Publica
K1 6310.03 Enfermedad
AB 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.
PB Taylor and Francis
SN 1360-3116
YR 2025
FD 2025
LK https://uvadoc.uva.es/handle/10324/83997
UL https://uvadoc.uva.es/handle/10324/83997
LA spa
NO Obregón, L. J., Coca, J. R., Gómez, N. P., & Redondo, S. G. (2025). Rare diseases and socio-educational dimension: a systematic review. International Journal of Inclusive Education, 1–22. https://doi.org/10.1080/13603116.2025.2577267
DS UVaDOC
RD 13-abr-2026