Impacting the quality of life and the inclusion of people with rare diseases and their families

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Published 2024-07-08
Esti Amenabarro Iraola Nagore Ozerinjauregi Beldarrain

Abstract

The Inkluni Research Group (UPV/EHU) has historically stood out in the field of inclusion of children and adolescents with rare diseases and their families. Its research work on the optimisation of the quality of life of these people and their families, as well as their immediate environment, stands out. In this sense, throughout its history, it has developed various projects, each with its own specific characteristics, which converge in two core ideas: on the one hand, the inclusion of people with rare diseases and their families, although an important framework for socialisation, should not be limited only to the school environment; on the other hand, this broadening of the inclusive concept requires attention focused on the other systems (health, social), beyond the education system. Likewise, this work allows for a deepening of inclusive values, both theoretically through the construction of its own corpus created from subjective experiences, and in turn, generates scenarios of deepening for the presence, participation, learning and equity of individuals with rare diseases; methodologically, self-formed research proposals based on inclusion and social justice are proposed, framed within the parameters of research action, complemented by the meaningful participation of the families of children and adolescents with rare diseases, as well as the participation of professionals from the health, educational and social fields. In addition to highlighting Inkluni's pedagogical and inclusive contribution, the work we present here aims to establish the strategic lines of research on rare diseases for the future.

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