Edwige is the Chairwoman of the French Dystonia Association, Amadys. The objectives of the association are to provide support to dystonia patients, to raise public awareness, to promote research and to organize meetings and events. Edwige works in the purchasing and marketing deptartment of a company near Paris. She was diagnosed in 1994 with cervical dystonia. She was elected to the DE Board at the General Assembly in Rome in 2017.