Community

Canadian CdLS Foundation



We are a not for profit charitable foundation registered with the Canada Revenue Agency (CRA Registered Charity # 70726 3885 RR0001), serving Canadians impacted by a rare genetic syndrome called Cornelia de Lange Syndrome (CdLS).  We support families, caregivers, clinicians and educators with information, resources and programming.  We increase awareness and early diagnosis to ensure each individual with CdLS can lead a high quality of life.

Our Mission

 

At the Canadian CdLS Foundation, our mission is to ensure every Canadian born with CdLS  thrives from birth to old age.

Strategies to accomplish our mission

  • Find families impacted by Cornelia de Lange Syndrome (CdLS).
  • Raise awareness and improve early diagnosis of CdLS.
  • Empower families to care and advocate for their family member with CdLS.
  • Provide support, resources, and education to families, care providers, educators and clinicians of individuals with CdLS

 

Calendar of our events   

What we do

Family Support

  • We provide support to families impacted by CdLS though outreach services. We connect families with others in their area or those with similiar challenges. 
  • We support families in navigating the healthcare system and the education system to ensure their family member has equal access to services they need.​

CdLS Awareness

CdLS awareness is important to individuals with the syndrome, their families and their healthcare service providers and families. This will increase understanding, appropriate approaches to care and access to services.

Early Diagnosis

Early diagnosis is essential in achieving a high quality of life. Diagnosis will:
  • ensure appropriate diagnostic testing
  • ensure proper management of common health conditions associated with CdLS
  • enable access to early intervention services including speech and language therapy, occupational therapy, physiotherapy and other essential therapies
  • enable timely access to emotional and other supports to families
Supports
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Contact information

Read more about our community...

Our Volunteers and Supporters...

Provincial Family Coordinator- British Columbia

Kim Fenton

Arie Verhoef

Founder & CEO

Jenni Glad Timmons

Family Coordinator

Ariel Lalonde

Get connected

Follow these steps...

Otherwise contact your national centre of expertise


Our communities

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Dansk

Cornelia de Lange foreningen

denmarknorwayswedenfinland
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English

CdLS Foundation UK and Ireland

united kingdomireland
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Español

Asociación Española Síndrome de Cornelia de Lange (AESCdL)

spain
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English

Canadian CdLS Foundation

canada
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עברית

(CdLS) האגודה הישראלית תסמונת קורנליה דה לנגה

israel
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Deutsch

Arbeitskreis Cornelia de Lange Syndrom e.V.

germanyaustriaswitzerland
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Español

Comunidad 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 FRANÇAISE 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