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
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
Leia mais sobre a nossa comunidade...