Abstract

DEL BARRIO, J. A.  and  CASTRO, A.. Infrastructure and resources of social, educational and health support in rare diseases. Anales Sis San Navarra [online]. 2008, vol.31, suppl.2, pp.153-163. ISSN 1137-6627.

Rare diseases (RD) pose a great challenge to our society in different fields: health, social and educational. This means that multidisciplinary interventions are required that deal with the negative impact of these diseases on the people affected and their families. In order to minimise the repercussion of these problems there are a series of support resources in the different fields referred to (social, educational and health) that provide welfare, favour social integration and improve the quality of life of the people affected and their families. With respect to the educational field we present an analysis of the forms of schooling and types of curricular adaptation as well as Hospital Classrooms. With respect to the social field we consider the importance of the associative movement, the types of support it provides, the Law of Promotion of Personal Autonomy and the map of services. Finally, with respect to the health field, we discuss genetic counselling. As a conclusion, we set out some of the challenges and expectations in each of these fields, bearing in mind that a global approach to intervention can be an optimum solution facing this challenge.

Keywords : Rare disease; Social support resources; Forms of schooling; Support group; Mutual support group; Associative movement.

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