Strategies to accomplish our mission
Find families impacted by Cornelia de Lange Syndrome (CdLS). Connect them to supports, resources and community.
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Raise awareness and improve early diagnosis of CdLS and other rare isolating conditions.
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Empower families to care and advocate for their rare family member.
Provide support, resources, and education to families, care providers, educators and clinicians of individuals with CdLS.
What is Cornelis de Lange Syndrome (CdLS)
CdLS is a rare genetic disorder present from birth. CLS can cause a broad range of potential physical, cognitive, and medical challenges. Physical features and medical conditions occur along a continuum with varying degrees of severity. No two individuals with C d S are the same. It is estimated that CdLS occurs in 1in 10,000 live births, regardless of race, sex or economic status. CdLS presents with variable features and with varying degrees of severity.
CHARACTERISTICS OF CDLS
CdLS can cause a broad range of potential physical, cognitive, and medical challenges. Physical features and medical conditions occur along a continuum, with varying degrees of severity. No two individuals with CdLS are the same. As with other syndromes, individuals with CdLS strongly resemble one another. Common characteristics include low birth weight (often under 5 pounds), slow growth, small stature, and small head size. Typical facial features include eyebrows that meet in the middle, long eyelashes, a short upturned nose, and thin downturned lips. Other features may include excessive body hair and small hands and feet.
Common medical issues include:
• Gastro-esophageal reflux disease (GERD) • Heart defects • Seizures • Feeding difficulties
• Vision problems • Hearing loss
Missing arms, forearms or fingers are also present in approximately 25% of present in approximately 25% of individuals with CdLS . Behavioural, communication and cognitive challenges often exist and may vary in severity.
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WHO WE ARE
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.
