Cornelia de Lange Syndrome » CdLS World Federation

CdLS World Federation

Last modified by Gerritjan Koekkoek on 2014/01/26 10:48
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CdlS World has been founded in 2001 in occasion of the first International CdLS Conference and  counts many members (Argentina, Australia, Canada, Denmark, France, Germany, Italy, Japan, Netherlands, Poland, Portugal, Spain, UK, USA) and is maintaining contact with single  families in more than 45  countries. We welcome groups that would like to join the federation. 

What does CdLS World do?

  1. From all over the world the Experts who know most about CdLS and a specific topic have formed a international Scientific Advise Committee (SAC). We make sure the SAC is informed about needs of the families and caretakers, so they can publish relevant news, present on conferences and answer questions in our Ask the Expert service;
  2. To act as a forum of best practice for support group services for people with CdLS, including organizing an International Conference every two years;
  3. to act as a resource base for the wider families of people affected by CdLS throughout the world for both research and for families.  
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Created by Gerritjan Koekkoek on 2009/07/12 19:32

                  

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