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 , 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

211

Stories of Parents

443

Questions with Answers

650

National supportgroups

21

Other numbers

Rarissimas Associação Nacional de Deficiências Mentais e RarasRarissimas Associação Nacional de Deficiências Mentais e Raras
portugal
Português
Asociación Argentina del Sindrome Cornelia de LangeAsociación Argentina del Sindrome Cornelia de Lange
argentina
Español, Italiano
The Cornelia de Lange Syndrome Association (Australasia) Inc (CdLSA)The Cornelia de Lange Syndrome Association (Australasia) Inc (CdLSA)
australia
new zealand
malaysia
philippines
singapore
English
CdLS South KoreaCdLS South Korea
korea, republic of
한국어
the Cornelia de Lange Syndrome (CdLS) Foundation USAthe Cornelia de Lange Syndrome (CdLS) Foundation USA
united states
English, Español
ASSOCIATION FRANCAISE DU SYNDROME DE CORNELIA DE LANGEASSOCIATION FRANCAISE DU SYNDROME DE CORNELIA DE LANGE
france
switzerland
belgium
algeria
Français
CanadaCanada
canada
English
Associação Brasileira Síndrome Cornélia de LangeAssociação Brasileira Síndrome Cornélia de Lange
brazil
Português
CdLS JapanCdLS Japan
japan
Jp
Ass. Naz. di Volontariato Cornelia De Lange ONLUSAss. Naz. di Volontariato Cornelia De Lange ONLUS
italy
Italiano
Arbeitskreis Cornelia de Lange Syndrom e.V. Arbeitskreis Cornelia de Lange Syndrom e.V.
germany
austria
switzerland
Deutsch
ChileChile
chile
Español
CdLS Foundation UK & IrelandCdLS Foundation UK & Ireland
united kingdom
ireland
English
Cornelia de Lange foreningensCornelia de Lange foreningens
denmark
norway
sweden
finland
Dansk
$supportGroupObject.getProperty('countryName').getValue()$supportGroupObject.getProperty('countryName').getValue()
Stowarzyszenie Dzieci i Rodzin Cornelia de Lange Syndrom (CdLS) w PolsceStowarzyszenie Dzieci i Rodzin Cornelia de Lange Syndrom (CdLS) w Polsce
poland
Polski
Central AmericaCentral America
mexico
belize
costa rica
el salvador
guatemala
honduras
nicaragua
panama
Español
Asociación Española Síndrome de Cornelia de Lange (AESCdL)Asociación Española Síndrome de Cornelia de Lange (AESCdL)
spain
Español
CdLS World federationCdLS World federation
English
Vereniging Cornelia de Lange syndroomVereniging Cornelia de Lange syndroom
netherlands
belgium
Nederlands

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.