Interdisciplinary Care for Children with Rare Diseases

Abstract

[eng] Children with chronic diseases, and in particular with rare diseases, require health, social and educational strategies to improve their quality of life. This article illustrates some the research developed in the Spanish context, as well as the aims of a current research project developed in the Balearic Islands. Paediatric health care has become very complex and requires interdisciplinary and transdisciplinary approaches that take into consideration the different environments in which the children spend their lives. The school means an educational but also the main social context for children. The strategies addressed to facilitate inclusion of children with rare diseases as well as the training of the teaching staff and the coordination with the health services make necessary contextualised and applied research with impact for families and the efficiency of public services.