NATIONAL AWARENESS DAY DECLARED FOR RARE SYNDROME

Cornelia de Lange Syndrome Foundation celebrates 15th annual day of awareness across the nation.

On May 10, people across the nation will celebrate the 15th Annual Cornelia de Lange Syndrome (CdLS) Awareness Day. Traditionally, governors in all 50 states and Puerto Rico are asked to sign proclamations declaring that the second Saturday in May be set aside to call attention to this rare genetic syndrome affecting between one in 10,000 and one in 30,000 live births world-wide. The CdLS Foundation, located in Avon, CT, estimates that there are thousands of individuals in the United States living with the condition without benefit of a diagnosis or the services they provide.

Characteristics of the syndrome include low birth weight, delayed growth, small stature and head size, short upturned nose, thin down turned lips, developmental delays, feeding difficulties, thin eye brows (that often meet), and, occasionally, upper limb abnormalities. As little as 25 years ago, diagnosis of CdLS was difficult and often delayed. Today the CdLS Foundation offers a lifeline to families of children with the syndrome, providing counseling, comfort and support, as well as information about the latest research.

The CdLS Foundation is a family support organization whose mission includes ensuring early and accurate diagnosis of CdLS and promotes research into the causes and manifestations of the syndrome. The Foundation helps people with a diagnosis of CdLS and others with similar characteristics make informed decisions throughout their lifetime. Established in 1981, the Foundation is the only United States organization that meets this need.

For further information about CdLS, contact the Foundation at 1-800-753-2357 or visit their website at: www.CdLSusa.org.