Hi, Kirsten:

There are many online groups for different things - this one is called "Edsers" for people who have the syndrome: http://health.groups.yahoo.com/group/edsers/ You have to register for the group but it is free. Perhaps you can find one in the Yahoo groups in Germany if the diagnosis is confirmed. I have read a bit about it online in the last few minutes and it seems there are several different kinds.

A couple of more possible resources:
GERMANY

Deutsche Ehlers-Danlos Iniziative e. V.
Grauthoffweg 78
D-33758 Schloss Holte-Stukenbrock
Johanna et Gilles Guénot
[email protected]
Note: this association is primarily intended for patients affected by Ehlers-Danlos syndrome(s).

Deutsche Ehers-Danlos Initiative e.V.Cadolzburger Str. 119
D-90766 Fuerth, Germany
Telephone: 49-911-9733539
Fax: 49-911-9733529
E-mail: [email protected]


My prayers are with you.