Meet us

Meet us

The diagnosis CdLS is a shock for parents. The condition is so rare and unknown, the perspective is so uncertain. As experienced family members we want to be there for parents, children, relatives, teachers, therapists, employers and other interested organizations and professionals.

Our mission

"We are determined to contribute to an early and accurate diagnosis of the Cornelia de Lange syndrome (CdLS), to support research into aspects of the syndrome, to help people with CdLS and to parents, brothers and sisters, grandparents, families help carers and doctors to make decisions based on good information. ""

CdlS World has been founded in 2001 in occasion of the first International CdLS Conference and currently it's members support families in algeria , argentina , australia , austria , belgium , brazil , canada , denmark , finland , france , germany , ireland , israel , italy , japan , malaysia , netherlands , new zealand , norway , philippines , poland , portugal , singapore , spain , sweden , switzerland , united kingdom , united states  and is maintaining contact with single  families in many more countries. We welcome groups that would like to join the federation. 

CdLS World; what do we 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.  

Our community around CdLS

What can you find here

Guidelines, Know-how's


Stories of Parents


Questions with Answers


National supportgroups


Other numbers

About the website contents

All of the information contained within these questions and answers is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know, contact see below.