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Background: Although participation of children with rare diseases in school is considered beneficial, it poses new challenges for the educational system, but also for the affected children and their families. The aim of this study is to identify which aspects of the schooling experience may have an impact on the health-related quality of life of children with rare diseases. Method: A qualitative study was conducted using the social-critical paradigm as theoretical perspective. Participants (n = 28) included children with rare diseases (n = 8), parents (n = 12) and school staff (n = 8). Data was obtained through in-depth interviews and focus groups and analysed through discourse analysis as methodological orientation. Results: Participants' discourses placed value on the social benefits of inclusion of children with rare diseases in schooling. Discourses also highlighted how the low numbers of children with rare diseases and the delay, or lack, of a clear diagnosis are among the difficulties experienced in the pursuit of the adaptations that children and teachers need to promote a healthy and normalized school experience. The issues identified in their health-related quality of life were summarized in seven categories: Attendance, Knowledge, Participation, Acceptance, Discrimination, Safety, Health-Related Support. Conclusion: Children with rare diseases remain, in many cases, invisible at the educational level due to the low numbers of children affected, limiting the kind of resources available to the child and teaching staff. This situation requires inter-disciplinary and inter-sector measures between health services and educational environments to articulate a comprehensive approach focused on children's clinical needs.

Rare diseases produce multiple impacts for the people who suffer from them, but they also have repercussions for their families, education and healthcare. The objective of this study is to analyze the coordination between healthcare and education professionals who intervene with children and adolescents with rare diseases. It is a qualitative study designed with a critical paradigm, and it was carried out through focus group discussions. A total of 50 people participated in the study, including healthcare professionals, teachers and families. The results suggest that poor communication and coordination negatively impact minors with rare diseases, placing an extra burden on their families, who take on an intermediary role in communication. Participants in the study recognized coordination as an area for improvement as it can compromise equitable social and health services and inclusive education. Other measures must also be put into action at the public administration level not only to establish protocols for intersectoral coordination, but also to increase the knowledge and awareness of staff involved in health and education interventions for children with rare diseases.

Resumen Entre los aspectos que contribuyen a la calidad de vida familiar están los diferentes apoyos a las familias. Este estudio tiene como objetivo identificar el tipo de apoyos que consideran relevantes las familias de niños con discapacidad usuarios de servicios de fisioterapia en atención temprana y en qué manera la administración pública influencia la calidad de esos apoyos. Se trata de un estudio cualitativo fundamentado en un paradigma crítico social. Los participantes han sido 16 madres y 4 padres que han sido entrevistados, y sus aportaciones se analizaron con análisis de discurso. Entre las aportaciones se destaca la importancia de los apoyos familiares y de las redes de padres de niños con discapacidad. También se destaca el papel de los apoyos profesionales y por lo tanto cómo los recortes en servicios públicos de tipo sanitario y social han agudizado una inequidad en salud en relación a las familias que pueden o no disponer de servicios adicionales. Se sugieren otros enfoques en los servicios que pueden apoyar a las familias.

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