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Groupe d’étude et de recherche sur le syndrome d’Ehlers-Danlos (GERSED) France

France

/ https://gersed.org/ https://www.youtube.com/channel/UCzFBQtG_TPPVK9h_RF2wvew

About this Group

Mission: To coordinate efforts in order to improve the diagnosis and treatment of EDS and promote research.

– Exchange of knowledge and experiences on the diagnosis and treatment of EDS

– Share bibliographic information

– Organization of epidemiological surveys

– Enrichment of semiological knowledge of EDS

– Study of potential therapies and evaluation of treatments

– Organization of training for health professionals and social actors: “SEDenligne” is a series of webinars on various topics (diagnosis, treatment, comorbidities, etc.).

– Organization of clinical and therapeutic education sessions for health professinals, patients and their families. An in-person annual education meeting is organized and web broadcasted live.

– Production of scientific work on EDS

– Recognition of the social and therapeutic rights of patients with EDS.

Health professionals, patients and caregivers can become members.

The founding president of the patient organization “SED’in France” sits on the Board of the GERSED as a patient representative.

Patients and caregivers can contact GERSED. Health professionals answer their questions, refer them to doctors or clinics and also to SED’in France and other patient organizations for support. Patients have access to documents such as recommendations in case of emergency and the recordings of the SEDenligne training sessions.

In 2023, for the first time the GERSED offered grants and made its first call for research proposals.

Meeting Schedule

Annual education meeting in the fall

Webinars throughout the year

 

  • Support Group
  • Affiliate
  • This group holds in-person meetings
  • This group holds virtual meetings

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