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oai:uvadoc.uva.es:10324/839972026-04-13T19:01:54Zcom_10324_971com_10324_931com_10324_894col_10324_972

Obregón, Lilian Johanna Coca, Juan Romay Gómez, Nicolás Plaza Redondo, Susana Gómez 2026-04-11T16:59:26Z 2026-04-11T16:59:26Z 2025 2027-04-23 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 1360-3116 https://uvadoc.uva.es/handle/10324/83997 10.1080/13603116.2025.2577267 1 22 International Journal of Inclusive Education 1464-5173 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. Ministerio de Universidades (FPU) This work was supported by Ministerio de Ciencia, Innovación y Universidades: [Grant Number FPU23/00812]. application/pdf spa Taylor and Francis info:eu-repo/semantics/embargoedAccess http://creativecommons.org/licenses/by-nc-nd/4.0/ Attribution-NonCommercial-NoDerivatives 4.0 Internacional Educación inclusiva Enfermedades raras Atención a la diversidad Necesidades educativas específicas Inclusive education Rare diseases Diversity in education Special educational needs Rare disease inclusive education socio-educational dimension inter-institutional coordination 5802.05 Educación especial 3212 Salud Publica 6310.03 Enfermedad Rare diseases and socio-educational dimension: a systematic review info:eu-repo/semantics/article info:eu-repo/semantics/acceptedVersion https://www.tandfonline.com/doi/full/10.1080/13603116.2025.2577267 SI