ID #1006

Are there CS support groups outside of the US? How large are they? Where do they meet?

TheFrench association : Association Française dusyndrome de Costello, http://costello.free.fr/

This association expanded to includefamilies with CFC syndrome in 2005. Most of the members are French, but thereare also families from other European and non European countries. Around 50families (30 families with Costello syndrome, and 20 with CFC syndrome)maintain contact with the association using e-mail.  This is done in different languages (English,Spanish, etc.).  Biannual meetings areorganized so that people with Costello and CFC syndromes can benefit fromspecialized clinics. Sessions also focus on non-medical topics (for example,the role of the grandparents, the siblings).Currently, these meetings have been organized in France. A translator isproposed for the non-French-speaking families to expand their role to become a "Euro-Costello" group.

The Italian association does not have a website.

The address for the Swiss site is http://www.costellokids.ch 

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