Initial Pre-Service Teacher Education on Rare Diseases: A Sensitization Experience in the University Context
Abstract
This study explores the impact of an awareness campaign on rare diseases (RDs) in the training of future teachers, focusing on their preparation to support students with special educational needs associated with these conditions. The campaign, implemented at the Faculty of Education of the University of the Balearic Islands, aimed to reduce the lack of awareness surrounding RDs and enhance participants’ capacity to provide inclusive educational responses. A quantitative, exploratory methodology was applied to a sample of n = 419 students enrolled in Early Childhood Education, Primary Education, and Pedagogy programs. Their levels of knowledge, misconceptions, and knowledge gaps were analyzed using the Rare Disease Knowledge Questionnaire (RDKQ). The results indicate that students in Early Childhood Education demonstrated greater knowledge of RDs than their peers in Pedagogy and Primary Education. Additionally, a slight reduction in misconceptions and knowledge gaps was observed among students who participated in the campaign, although the overall level of knowledge about RDs remained limited. These findings suggest that awareness initiatives can effectively increase future teachers’ understanding of RDs; however, additional training strategies are needed to consolidate this knowledge and promote high-quality inclusive education.
Downloads
-
Abstract0
-
PDF (Español (España))0
References
Abreu, J. L. (2012). Constructos, Variables, Dimensiones, Indicadores & Congruencia (Constructs, Variables, Dimensions, Indicators & Consistency). Daena: International Journal of Good Conscience, 7(3), 123-130.
Adama, E. A., Arabiat, D., Foster, M. J., Afrifa-Yamoah, E., Runions, K., Vithiatharan, R., & Lin, A. (2021). The psychosocial impact of rare diseases among children and adolescents attending mainstream schools in Western Australia. International Journal of Inclusive Education, 1-14. https://doi.org/10.1080/13603116.2021.1888323
Alfaro, A. & Negre, F.(2019). Análisis de las necesidades de información que presentan los docentes respecto a la atención educativa del alumnado con enfermedades raras. Revista Electrónica Interuniversitaria de Formación del Profesorado, 22(1), 175-¬‐194.DOI: http://dx.doi.org/10.6018/reifop.22.1.326341
Arnaiz-Sánchez, P., Gallego Nicolás, L., De Haro-Rodríguez, R., & Alcaraz, S. (2022). ¿Qué Modalidad de Escolarización Prefieren los Equipos Directivos para el Alumnado con Apoyos Educativos Generalizados? . REICE. Revista Iberoamericana Sobre Calidad, Eficacia Y Cambio En Educación, 20(3). https://doi.org/10.15366/reice2022.20.3.002
Arnaiz, P. & Guirao, J. M. (2015). La autoevaluación de centros en España para la atención a la diversidad desde una perspectiva inclusiva: ACADI. Revista Electrónica Interuniversitaria de Formación del Profesorado, 18(1), 45-¬‐101. https://doi.org/10.6018/reifop.18.1.214341
Aróstegui, I., Ozerinjauregi, N., De La Iglesia, B., & Dainese, R. (2023). Claves para desarrollar contextos de aprendizaje inclusivos para el alumnado con enfermedades raras. Educatio Siglo XXI, 41(3), 31-50. https://doi.org/10.6018/educatio.566131
Aspesberro, F., Mangione-Smith, R., & Zimmerman, J. J. (2015). Health-related quality of life following pediatric critical illness. Intensive care medicine, 41(7), 1235-1246. DOI: 10.1007/s00134-015-3780-7
Carbajal Rodríguez, L., & Navarrete Martínez, J. I. (2015). Enfermedades raras. Acta pediátrica de México, 36(5), 369-373.
Closs, A. (2013). Education of children with medical conditions. Routledge, London. ISBN 1-85346-569-0
Coba, E., Grañeras, M., Vázquez, E. (2010). Spanish education system 2009. Estudios e informes. Ministerio de Educación. https://www.educacionyfp.gob.es/dam/jcr:5998a502-abb4-45d1-9009-bd06bf5cb43c/spanish-education-2009.pdf
Cortés, F. (2015). Las enfermedades raras. Revista Médica Clínica Las Condes, 26(4), 425-431. 10.1016/j.rmclc.2015.06.020
Del Barrio, J. A., & Castro, A. (2008). Infraestructura y recursos de apoyo social, educativo y sanitario en las enfermedades raras. In Anales del sistema sanitario de Navarra (Vol. 31, pp. 153-163). Gobierno de Navarra. Departamento de Salud.
EURORDIS, European Organisation for Rare Diseases. Rare diseases: understanding this public health priority. November 2005. Available from http://www. eurordis.org/IMG/pdf/princeps_document-EN.pdf.
Fernández Alarcón, V. (2006). Introduccion a la investigación en ciencias sociales. Working Paper. DITS. https://upcommons.upc.edu/handle/2117/501
Fernández, M., & Grau, C. (2017). Necesidades educativas, asistenciales y sociales especiales de los niños con enfermedades minoritarias: propuestas para una atención interdisciplinar. Revista de Educación Inclusiva, 7(3).
Foster, M., Adama, E., Arabiat, D., Runions, K., Vithiatharan, R., Zgambo, M., & Lin, A. (2021). Parents' experiences of children with a rare disease attending a mainstream school: Australia. Journal of pediatric nursing. https://doi.org/10.1016/j.pedn.2021.10.013
Gaintza, Z., Ozerinjauregi, N., & Aróstegui, I. (2018). Educational inclusion of students with rare diseases: Schooling students with spina bifida. British Journal of Learning Disabilities, 46(4), 250-257. https://doi.org/10.1111/bld.12246
García-Perales, R., Palomares-Ruiz, A., Ordóñez-García, L., & García-Toledano, E. (2022). Rare Diseases in the Educational Field: Knowledge and Perceptions of Spanish Teachers. International Journal of Environmental Research and Public Health, 19(10), 6057. 10.3390/ijerph19106057
Gonzalez-Gil, F., Martín-Pastor, E. y Poy, R. (2019). Educación inclusiva: barreras y facilitadores para su desarrollo. Análisis de la percepción del profesorado. Profesorado. Revista de Currículum y Formación de Profesorado 23(1), 243-263. DOI:10.30827/profesorado.v23i1.9153
Gras, A. (1980). Psicología experimental. Un enfoque metodológico. Trillas.
Guerra, S. J. R., Zeballos, C. J., Angulo PCH, et al. (2018) Educación emocional. Abordaje del proceso de la muerte en la escuela. Revista Cubana de Investigación Biomédica. 37(2):87-94.
Haimour, A. I., & Obaidat, &. F. (2013). School teachers' knowledge about autism in Saudi Arabia. World Journal of Education, 3(5), 45-56. http://dx.doi.org/10.5430/wje.v3n5p45
Herrán, A. D. L., Rodríguez, P., & Yubero, V. D. (2019). ¿Está la muerte en el currículo español?. Revista de educación.
Hopkins, L. (2015). An Australian and New Zealand review of education support for children with chronic health conditions. Melbourne: The Royal Children’s Hospital Education Institute.
Leiva Olivencia, J., Isequilla Alarcón, E., & Matas Terrón, A. (2019). La Universidad de Málaga ante la inclusión educativa de los estudiantes con diversidad funcional: ideas y actitudes del alumnado universitario. Revista Interuniversitaria De Formación Del Profesorado. Continuación De La Antigua Revista De Escuelas Normales, 33(2). https://doi.org/10.47553/rifop.v33i2.72835
Martínez-Domínguez, B. (2005). Measures for responding to diversity: Possibilities and limitations for school and social inclusion. Profesorado, revista de currículum y formación del profesorado, 9(1).
Molina, M. C., Roselló, M. R., Fernández, M., & Muntaner, J. J. (2023). Buenas prácticas educativas como motor de cambio en la atención del alumnado con enfermedades minoritarias. Educatio Siglo XXI, 41(3), 51-74. https://doi.org/10.6018/educatio.565411
Moliner, O., Sales, A., Cotrina, M. J., & García, M. (2023). Escuela y comunidad: factores y recursos que favorecen la inclusión educativa del alumnado con enfermedades raras. Educatio Siglo XXI, 41(3), 171-192. https://doi.org/10.6018/educatio.566551
Mukherjee, S., Lightfoot, J., & Sloper, P. (2000). The inclusion of pupils with a chronic health condition in mainstream school: what does it mean for teachers?. Educational Research, 42(1), 59-72. https://doi.org/10.1080/001318800363917
Peebles, J. L., & Mendaglio, S. (2014). The impact of direct experience on preservice teachers’ self-efficacy for teaching in inclusive classrooms. International Journal of Inclusive Education, 18(12), 1321-1336. https://doi.org/10.1080/13603116.2014.899635
Richter, T., Nestler-Parr, S., Babela, R., Khan, Z. M., Tesoro, T., Molsen, E., & Hughes, D. A. (2015). Rare disease terminology and definitions—a systematic global review: report of the ISPOR rare disease special interest group. Value in health, 18(6), 906-914. 10.1016/j.jval.2015.05.008
Riera, L., & Ruiz, J. D. (2021). Diseño de un repositorio digital para la gestión de la enfermedad grave y la muerte en pedagogía hospitalaria . Edutec. Revista Electrónica De Tecnología Educativa, (77), 120-135. https://doi.org/10.21556/edutec.2021.77.2177
Ronicke, S., Hirsch, M. C., Türk, E., Larionov, K., Tientcheu, D., & Wagner, A. D. (2019). Can a decision support system accelerate rare disease diagnosis? Evaluating the potential impact of Ada DX in a retrospective study. Orphanet journal of rare diseases, 14(1), 1-12. 10.1186/s13023-019-1040-6
Sanz-Cervera, P., Fernández-Andrés, M. I., Pastor-Cerezuela, G., & Tárraga-Mínguez, R. (2017). Pre-service teachers’ knowledge, misconceptions and gaps about autism spectrum disorder. Teacher Education and Special Education, 40(3), 212-224. https://doi.org/10.1177/0888406417700963
UNESCO. 2009. Towards Inclusive Education for Children with Disabilities: A Guideline. Bangkok: UNESCO Bangkok
Verger, S., Negre, F., Fernández-Hawrylak, M., & Paz-Lourido, B. (2021). The impact of the coordination between healthcare and educational personnel on the health and inclusion of children and adolescents with rare diseases. International Journal of Environmental Research and Public Health, 18(12), 6538. https://doi.org/10.3390/ijerph18126538
Verger, S., Negre, F., Rosselló, M. R., & Paz-Lourido, B. (2020). Inclusion and equity in educational services for children with rare diseases: Challenges and opportunities. Children and Youth Services Review, 119, 105518. https://doi.org/10.1016/j.childyouth.2020.105518
Wu, P. Chen, S. T., Chou, C. C. (2019) The effects of the class-wide function-related intervention teams on behaviors of an elementary student with autism spectrum disorder in an inclusive classroom in Taiwan International Journal of Developmental Disabilities, 65 (5), pp. 368-377. https://doi.org/10.1080/20473869.2019.1647031
Zurynski, Y., Frith, K., Leonard, H., & Elliott, E. (2008). Rare childhood diseases: how should we respond?. Archives of disease in childhood, 93(12), 1071-1074. http://dx.doi.org/10.1136/adc.2007.134940
Copyright (c) 2026 Servicio de Publicaciones de la Universidad de Murcia

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Original work publishes in this journal is subject to the following terms:
1. Murcia University Press (the publishing house) holds the copyright of the publishes work, and favours and allows their reutilization under the use license stated in point 2.
© Servicio de Publicaciones, Universidad de Murcia, 2015
2. Work is published in the electronic edition under a license (Creative Commons Reconocimiento-NoComercial-SinObraDerivada 4.0 España (legal text). They can be copied, used, disseminated, transmitted and publicly presented, as long as: i) authorship and original publication source is acknowledged (journal, publishing house and URL of the work); ii) are not used for commercial purposes; iii) the existence and specifications of this use license is stated.
3. Conditions for self-archive. Authors are allowed and encouraged to disseminate electronically the pre-pint (before review) and/or post-print (accepted for publication) versions of their work before their publication since that favours earlier circulation and dissemination resulting in an increased chance for the authors to be cited and for the work to reach a bigger share of the academic community. Colour: RoMEO: green.





