7

Introduction: This dossier brings together different proposals presented during the closing conference of the West Syndrome research program: construction of knowledge and singularity of family experiences (Fam-West). It was devoted to the therapeutic education of the patient (TPE) and its possible deployment in the context of the management of rare diseases. Aim of the study: Today, the communication approach of the common formal TPE could be qualified as informational. In this approach, knowledge is transmitted in a linear fashion from the caregiver to the patient and the development of the device is based on the message, the communication supports and their adaptation to the target. But the TPE approach could also be thought of as one of the possible places for developing experiential knowledge, through which the knowledge and skills that patients can develop through illness are recognized. Results: This dossier therefore intends to document the forms of incursion of the narrative within a specific care relationship that is the TPE, allowing at the same time to shed light on the way in which the health actors seize the narrative question in different contexts and also to bring new avenues of questioning relating to the relationship of TPE between caregivers, patients and those around them. Conclusions: It is from the angle of disciplinary dialogue that the place of storytelling in TPE has been questioned. This file thus crosses approaches in fundamental or interventional human and social sciences, engineering approaches or those of expert practitioners and patients who put theories and tools to work to bring about a “relational TPE” tomorrow by documenting its limits as well as its potential.