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 and caregivers, increase awareness and early diagnosis to ensure each individual with CdLS can lead a healthy high quality of life.
Our Mission
- Ensure every child born with CdLS in Canada thrives from childhood to old age.
- Empower families to care and advocate for their family member with CdLS.
- Provide support to families and care providers of individuals with CdLS.
- Raise awareness of CdLS in Canada to ensure early diagnosis.
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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
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