Ehlers-Danlos syndrome (EDS) community

Ehlers-Danlos syndrome (EDS) is a genetic connective tissue disorder characterized by joint hypermobility, skin hyper extensibility and abnormal wound healing.

The Swedish Ehlers-Danlos Syndrome National Association (EDS Riksförbund Sverige). by Swedish Ehlers-Danlos Syndrome National Association published about 1 month ago


This same video is available in Swedish here: www.youtube.com/watch?v=AaXADkhSFU4
Britta Berglund, the founder of the Swedish EDS association, gives a brief history in this video....

Testimony of Geneviève by Geneviève published about 1 month ago


I am 52 years old. At the age of 45, I learned that my daughter and I have Ehlers-Danlos syndrome.
At this point, I had to use a manual wheelchair for my travels. Despite signs related to the EDS since my childhood (hyperlaxity, fatigue, pain, weakness, digestive problems.. ), the ignorance of the illness caused me a great delay in diagnosis and to endure an inappropriate sequence of surg...

Jamie by IPPOSI published 2 months ago


Video courtesy of ipposi.ie
Jamie O'Brein describes life with a Rare Disease where there is no cure called Ehlers-Danlos syndrome type III.

Patient groups

  • EDS Sweden

  • AFSED France

  • Ehlers-Danlos National Foundation

Filters

Ehlers-Danlos syndrome (EDS) Recent Activity

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    Ecole du SED à Lyon : le PrEduSED
    topic, published about 12 hours ago

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    un projet fait pour vous patients atteints d'un SED hypermobile
    2ème session du programme d'Education Thérapeutique du Patient - PrEduSED©
    les 29-30-31 Mars et 01 Avril 2012
    au Centre Médico Chirurgical et de Réadaptation des Massues à Lyon
    organisé par l'AFSED, Association Française des Syn...

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    Conversation topic
    topic, published 1 day ago

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    Welcome and what a pleasure to be in touch via this website, we will be able to share our experiences and all our treasures of energy, and more importantly, if some of us travel, we will have the opportunity to meet in real life!!!

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    Greetings from Ohio
    topic, published 1 day ago

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    Just a floppy type III and her even more flexible daughter saying hi from the US... because of her diagnosis, I recently learned that it's not normal for me to be able to put my feet on my head at age 48.... Looking for friends and compatriots, as well as my ankle... I know it was around here so...

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    Hello,
    topic, published 7 days ago

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    I am very happy and honored to be with AFSED (French Association for EDS) at the origin of this project. Thanks to the effectiveness of Robert and to all patient groups that have agreed to participate.

    Welcome to all!

    Feel free to contact us, ask questions, and share your experiences and ...

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    EDS 2012 Conference Announcement
    document, published 8 days ago

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    Sept. 8-11, 2012 in Ghent, Belgium

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    Welcome & thanks for coming to the EDS community!
    topic, published 9 days ago

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    My name is Allie and I work for NORD- The National Organization for Rare Disorders. I am Rob's US counterpart and work on managing these communities.

    If you have any questions please do not hesitate to contact me at [email protected]

    Please share your story in the What? section. ...

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    Welcome message from the Swedish EDS forum moderator
    topic, published 9 days ago

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    Welcome everyone!

    I am Monica, one of the moderators for this EDS forum. I do hope you will join us in order to share your knowledge and experiences across language barriers! I want to take a moment and introduce myself, and also give a few reasons for us in the Swedish EDS association joining...

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    Welcome to the EDS Community
    topic, published 9 days ago

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    Thanks for registering. My name is Rob and I work with EURORDIS on the RareConnect: Rare Disease Communities project.

    This forum space is fully translatable across all the website's 5 languages. If you see a post in a language you don't understand, click on ASK FOR IT, to have that translation...

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    Genetics Home Reference: EDS
    news, published 14 days ago

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    General review article, free full text

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    Ehlers-Danlos Wallet Card (EN)
    document, published about 1 month ago

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    Provided by the Ehlers-Danlos National Foundation (2011).