Valérie is the founder and President of UNSED who in 6 years has become a national association approved by the Ministry of Health, She begins an expert patient training, member of OSCAR, Tetecou and Eurordis. She is also personally affected by EDS and is particularly involved in the evolution of the governmental recognition of EDS in France. Her daily fight against the illness, the late treatment or the medical abuse that she underwent allow her to share the experience of each patient and thus better understand them and defend their cause. She is very invested and collaborates closely so that a national sector EDS and the establishment of a national protocol diagnosis and care are set up in Franceshe also regularly organizes international congressesthanks to the valerie’s determination, the association was able to finance several research projects for the team of Ph Sylvie Fournel Gigleux.
Patient Expert (France)