Canadian CdLS Foundation Welcomes You
At the Canadian CdLS Foundation, our mission is to:
1. Ensure every child born with CdLS in Canada thrives from childhood to old age.
2. Empower families to care and advocate for their family member with CdLS.
3. Provide support to families and care providers of individuals with CdLS.
4. Raise awareness of CdLS in Canada to ensure early diagnosis.
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.
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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
CdLS affects 1:10 000 individuals, yet in Canada there are only a few hundred known cases. Some are not yet diagnosed, diagnosed later in their teens or even as adults. Many are not aware of the network of support available from other families who are on the same journey. We can connect families to the right care providers and assist in navigating the healthcare system. We help educate healthcare providers to ensure they have the knowledge and support they need to provide high quality of care.
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.