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National report - France by Ginette Volf

Ginette Volf reported: As you have seen, the Therapeutic Patient Education has resulted in the development of tools that could be used well beyond lupus national reference centre. Other experiences have been presented during last September’s National Lupus day. They will be shared by nine hospital institutions aiming to build teams that integrate patients as experts of their own disease who are trained to further deploy methodology of those sessions.
A questionnaire is currently being distributed to seek the perspective of people that have participated to this sessions. This work underscores the major evolution of the handling of the disease. This is a trend that we share with many other patients’ organizations as it was discussed further by the sociologists Vololona Rabeharisoa.
Within the associations these two knowledge teams meet and cross to a mutual sharing: the knowledge of doctors as well as that of patients. There is no doubt that this new direction will result in an increase in the well-being of patients.
There are two issues resolved, on the one hand identifying patients that are sufficiently available and motivated to take an active part in these groups and become national success in our organization. On the other hand, ensure that these sessions become an integrated part of the ongoing care of patients, so that the work of these doctors, physiologists and other medical professionals is properly evaluated and recognized. For the time being this essentially is based on voluntary work, but it will be important that this changes over time.