Ehlers-Danlos syndrome (EDS) community

Here's a selection of information from patients & professionals to better understand Ehlers-Danlos syndrome (EDS).

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All Ehlers-Danlos syndrome (EDS) Patient Groups

  • EDS Sweden

    Ehlers-Danlos syndrom Riksförbund Sverige The Ehlers-Danlos syndrom Riksförbund Sverige is the Swedish national association for people with Ehlers-Danlos Syndrome (EDS) and their families. It is a non-profit association which was founded by Britta Berglund in 1992 with the aim of making information about EDS available in Swedish, and to create a meeting place for people with EDS. There is also a scientific council and an online support forum. EDS Riksförbund is working to increase knowledge about EDS in society by arranging information meetings aimed at the general public, health professionals and other involved professionals. EDS Riksförbund has also issued an informational pamphlet about EDS called Min bok om EDS (My book about EDS). The pamphlet can be found on the website as well. As a member of EDS Riksförbund you can get in contact with other people in the same situation as yourself. There are patient representatives in most counties and member meetings are arranged on a regular basis in various places throughout Sweden. There is an online support forum EDS-forum where people can post questions and discuss various topics. The member journal EDS-bladet is issued twice a year. EDS Riksförbund is a member of •Sällsynta Diagnoser (Rare diseases Sweden) which is the national alliance for different groups of rare diseases. •Eurordis (Rare diseases Europe). •Nordic EDS Network, together with Norway and Denmark. EDS Riksförbund also has a Scientific Council and a foundation, EDS-stiftelsen. The number of members in the association is currently around 600.

    Contact EDS Sweden
  • AFSED France

    L’association a pour buts de : “faire connaître les différents types des SED (Syndromes d'Ehlers-Danlos); aider et soutenir les personnes atteintes d'un SED et leurs familles, favoriser leur insertion scolaire, professionnelle, économique, sociale et psychologique; élaborer un triptyque d'information sur la maladie; informer les malades ; informer le corps médical de façon spécifique et sur justification professionnelle; élaborer un passeport personnel concernant la maladie, ses risques en urgence et la conduite à tenir, traduit dans toutes les langues européennes; aider les équipes de recherche fondamentale et appliquée concernant le collagène dans les voies de recherche de la guérison des Syndromes d'Ehlers- Danlos; représenter les adhérents auprès des pouvoirs publics et des associations étrangères similaires.

    Contact AFSED France
  • Ehlers-Danlos National Foundation

    Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder Ehlers-Danlos syndrome.

    Contact Ehlers-Danlos National Foundation

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