This is federation of national volunteer groups around the world about the Cornelia de Lange syndrome (CdLS)

Our Goals:

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.

To act as a forum of best practice for support group services for people with CdLS, including organizing an International Conference every two years.

To act as a resource base for the wider families of people affected by CdLS throughout the world for both research and for families.

CdLS World Federation

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