UNSED, Union Nationale des Syndromes d’Ehlers-Danlos
France
About this Group
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 the disabling clinical manifestations and deterioration in quality of life caused by the Ehlers-Danlos Syndromes and hypermobility spectrum disorders.
It endeavors to raise funds and grants to finance research projects aimed at bringing advances in the understanding, diagnosis, and treatment of the Ehlers-Danlos Syndromes and hypermobility spectrum disorders. 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.
- Charity Organization
- Support Group
- Global Alliance Member
- This group holds in-person meetings
- This group holds virtual meetings
