Le sindromi genetiche rare. Percorsi educativi

The spectrum syndromes considered rare by medical literature is very wide. This research has focused on four syndromes (Prader-Willi, Rett, Angelman and Kabuki syndrome), linked by the presence of mental retardation, though to different degrees, and following a policy of incidence statistics. The research shows the most recent findings on cognitive functioning, the development of the personality, the relational aspects and possible strategies of educational intervention, rehabilitation and social integration for each syndrome. The issues of this work are developed within an epistemological framework designed to problematize the ‘care’ dimension as an ontological model with close relations with the educational sciences. Only recently social sciences have begun to inquire about the meaning of care in pedagogical terms, leaving the old points of view who saw it relegated and limited to a medical practice (care as lack) or to a natural process of parental and family support (care as obviousness). The aim of this work is to recover the complexity and depth of meaning of the care concept, through the historical and philosophical significance of the word, against any attempts of crystallization of it and in order to use it in educational sciences.