Ehlers-Danlos and Chiari networking in Switzerland ....

Last activity 16 January 2012 by Jeviensdusud

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BertrandGenèveMember27 November 2011 15:55:34

A bit of a strange post, but I do it to help a friend of mine.

She's a Canadian expat who came in Geneva with her parents (that would be more correct to say that her parents brought her here).
She's got an Ehlers-Danlos syndrome and an Arnold-Chiari malformation and I'm trying to find other people who could have it too in Switzerland (and who speak English) so they could share information. We are already in contact with a Swiss woman living in the Swiss-German part.

We're also on facebook, but much of the people are in the UK, in the USA or Canada (we actually made a group facebook.com/groups/162271097198319/

So, if you know of somebody....

(to the mod : it's OK if you delete this post, but I had to post it...)

ChristineViP28 November 2011 06:47:38

42879

Hi BertrandGenève,

I hope you will get lot of contacts here.

All the best,
Christine

JeviensdusudActive member16 January 2012 19:41:23

Hi BertrandGenève,

Here is a MD, Dr. Scarlet Huissoud in Fribourg, that you can contact. She knows about thit pathology and may be able to direct your friend to a support group though, in Switzerland, it is not recognized as being an invalidating condition :

http://www.les-medecins.ch/1725/5/50756 … detail.htm

Wishing the best to your friend.

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