Welcome to the CdLS Foundation’s online press kit. This section contains information for media working on stories about CdLS.
CdLS Quick Facts
- CdLS is a genetic syndrome present from birth. There is no cure.
- CdLS occurs in approximately 1 in 10,000 live births. It affects males and females equally, and is seen in all races.
- The severity of CdLS ranges from mild to severe, but all individuals with CdLS share similar characteristics, such as small stature, hands, feet, and head; joined eyebrows; long eyelashes; upturned nose; and thin, downturned lips. Physical and cognitive development is delayed. Self-injurious behavior is common, and between 60-70% display some degree of autism spectrum disorder. Speech and language are delayed or absent. Limb differences and/or missing limbs occur in 25% of cases. Common medical problems include gastroesophageal reflux disease, bowel abnormalities, heart defects, seizures, and cleft palate.
- Since 2004, changes in five different genes have been identified as causing CdLS.
- In 99% of cases, the gene change that causes CdLS is sporadic, not inherited, which means the change occurs randomly during conception.
- Researchers estimate there are 20,000 individuals in the U.S. who have CdLS but live without diagnosis and/or support services.
CdLS Foundation Quick Facts
- The Foundation was founded in 1981 by parents of children with CdLS and interested medical professionals.
- The Foundation is a family support organization that works to ensure early and accurate diagnosis of CdLS; promote research into the causes and manifestations of the syndrome; and help people with a diagnosis of CdLS make informed decisions throughout their lifetime.
- Currently, the Foundation serves more than 2,600 people with CdLS; 10,000 family members/caregivers; and 2,500 clinical professionals.