SED1+ is a national patient association created in 2015.
Its missions are to raise awareness, inform and discuss Ehlers Danlos Syndrome and HSD among the general public, patients and their caregivers, and health professionals and future health professionals.
Local actions are proposed so that the SED and the HSD are known and taken into consideration in the Pyrénées-Orientales.
The association works in conjunction with caregivers: disability forum, action days in the town of Bompas and at the Bouffard Vercelli rehabilitation center in Perpignan. Public awareness events are organized during the year in order to provide everyone, sick or accompanying: well-being, information, tips and advice, conviviality, support and sharing with coffee -monthly talks, information and discussion meetings, hotlines at local and regional level.
Health
