Germany EDS Support Groups and Charities

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Ehlers-Danlos Initiative e. V.

We are the main patient organisation for patients with Ehlers-Danlos Syndromes, Hypermobility Spectrum Disorders and related rare connective tissue disorders in Germany. Founded in 1996 we are well known and respected within the health care community in Germany and participate actively in the main rare disease organisations. Fostering early diagnosis and research on the one hand and helping patients and their families to cope with the disease in daily life on the other hand are our main aims. We are networking with the EDS Community around Europe for a long time now. Our organisation is growing steadily and has around 400 Member Families today.

Ehlers-Danlos Selbsthilfe e.V.

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