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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 , colombia , denmark , finland , france , germany , ireland , italy , 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

 

Our national contact points for support

Vereniging Cornelia de Lange syndroom

Netherlands, Belgium

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Other numbers

Our communities

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Dansk

Cornelia de Lange foreningen

denmarknorwayswedenfinland
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English

CdLS Foundation UK & Ireland

united kingdomireland
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Español

Asociación Española Síndrome de Cornelia de Lange (AESCdL)

spain
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English

Canada

canada
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Deutsch

Arbeitskreis Cornelia de Lange Syndrom e.V.

germanyaustriaswitzerland
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Español

Asociación Argentina del Sindrome Cornelia de Lange

argentina
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Português

Associação Brasileira Síndrome Cornélia de Lange

brazil
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Italiano

Ass. Naz. di Volontariato Cornelia De Lange ONLUS

italy
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Português

Rarissimas Associação Nacional de Deficiências Mentais e Raras

portugal
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Nederlands

Vereniging Cornelia de Lange syndroom

netherlandsbelgium
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Français

ASSOCIATION FRANCAISE DU SYNDROME DE CORNELIA DE LANGE

franceswitzerlandbelgiumalgeria
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Polski

Stowarzyszenie Dzieci i Rodzin Cornelia de Lange Syndrom (CdLS) w Polsce

poland
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English

the Cornelia de Lange Syndrome (CdLS) Foundation USA

united states
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English

The Cornelia de Lange Syndrome Association (Australasia) Inc (CdLSA)

australianew zealandmalaysiaphilippinessingapore
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Español

Fundación CDLS COLOMBIA

colombia

About the website contents

All of the information on this WebSite 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 at: 

Send a email: info@cdlsWorld.org