UNSED
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Mission Statement
L'UNSED, Union Nationale des Syndromes d'Ehlers-Danlos est agréée par le Ministère de la santé, reconnue d'intérêt général par le ministère des Finances, Loi 1901. Créée en Juin 2011. Ce sont plus de 700 membres aujourd'hui. L’UNSED est une association de malades ayant pour but de sensibiliser l’ensemble des acteurs scientifiques, médecins, paramédicaux ainsi que le grand public aux manifestations cliniques invalidantes, au handicap et à la détérioration de la qualité de vie qu’entraine les Syndromes d’Ehlers-Danlos. Elle s’attache à réunir des dons et des subventions afin de financer des projets de recherches visant à apporter des avancées dans la compréhension, le diagnostic et le traitement des Syndromes d’Ehlers-Danlos. UNSED is approved by the Ministry of Health The association is involved in many missions : We represent users in hospital or public health authorities. We are engaged in the therapeutic education of the patient, with expert-patient resources interveners, trained in therapeutic education. We act for the right of family caregivers.
About This Cause
Union Nationale des Syndromes d'Ehlers-Danlos (National Union Ehlers-Danlos Syndromes) is a french national association approved by the french Ministry of Health, created in 2011. UNSED is an association of patients with the aim of raising awareness of all scientific actors, doctors, paramedics as well as the general public with disabling clinical manifestations, disability and deterioration in quality of life caused by Ehlers-Danlos Syndromes. It endeavors to raise funds and grants in order to finance research projects aimed at bringing advances in the understanding, diagnosis and treatment of Ehlers-Danlos Syndromes. We have been working with our rare disease sectors since the creation of UNSED. Our relationship with the reference center of rare disease (CRMR) is our priority in order to spread the most accurate and up-to-date information. These are common commitments: - International congresses - Meetings - Publications - Several information videos - Meetings in the field with health professionals - Meetings with patients - Medical publications in the mainstream press - Establishment of the therapeutic education for patients (ETP) - Proofreading of the national protocol for diagnosis and care (PNDS).