Association 'Turner et Vous'
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Mission Statement
The association "Turner et Vous" federates, supports, accompanies, people with Turner Syndrome and their loved ones. It aims to strengthen knowledge, improve medical management of the Syndrome and promote the emergence and advancement of medico-social research projects.
About This Cause
To date, the association has united more than 900 families with Turner syndrome in France and neighbouring countries. It develops a real synergy within many national and European organizations to support rare disease actors (FIRENDO, EURORDIS, Alliance Maladies Rares, etc.). Through individual accompaniment as well as numerous collective workshops, the association speaks on behalf of patients and families to the associations and institutional bodies. Collective listening workshops, individual accompaniments aimed at setting up and/or remobilizing the care pathway or access to rights. A great deal of sociological research is carried out within the association, in addition to supporting scientific and/or sociological research projects carried out by researchers and the medical teams of many centres of expertise. In France, the association develops more than 10 regional teams that aim to foster the emergence, strengthening ties between families and patients at the local level. It aims to develop, support and reinforce therapeutic education programs for the patient that contribute to a better acceptance of the pathology by the patient and his/her loved ones.