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 for CdLS.
- CdLS occurs in approximately 1 in 10,000 live births. It affects males and females equally, and is seen in all races.
- CdLS is not a degenerative disease.
- CdLS is considered a spectrum disorder, with some individuals being more adversely affected than others.
- With advances in medical care and nutrition, along with early intervention therapy and ongoing physical activity, individuals with Cornelia de Lange Syndrome (CdLS) are living well into adulthood.
- The incidence of CdLS is thought to be approximately 1 in 10,000 live births.
- An estimated 33,000 people in the U.S. have CdLS, but remain undiagnosed and/or without support services.
- Common medical problems include: Gastroesophageal Reflux Disease (GERD), bowel obstruction, hearing loss, and congenital heart defects, low birth weight (often under five pounds), slow growth, small stature, and small head size, behavioral and communication issues as well as developmental delays.
- Early diagnosis and intervention are essential to ensure proper management of related medical issues.
- Many individuals with CdLS can achieve an independent life through adaptive behaviors and skills training.
- 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 seven different genes have been identified as causing CdLS.
CdLS Foundation Quick Facts
- The Cornelia de Lange Syndrome Foundation is a national nonprofit family support organization that exists 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 and their families make informed decisions throughout their lifetime.
- The CdLS Foundation serves over 3,000 people with CdLS in the U.S., along with about 10,000 parents and relatives, and thousands of professionals.
- The CdLS Foundation is the only organization solely dedicated to CdLS in the country.
- The CdLS Foundation has served people with CdLS and their families since 1981.