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Cornelia de Lange Syndrome Foundation, Inc.



Address

302 West Main Street, #100
Avon, CT 6001

Phone

8606768166

Fax

8606768337

800 Number

8007532357

Email Address

info@cdlsusa.org

Description

The Cornelia de Lange Syndrome Foundation (CDLSF) is a non-profit, family health organization. CdLS is a rare, congenital disorder characterized by mental retardation, low birth weight, and distinctive facial features including a small head size, thin eyebrows that meet at midline, long eyelashes, a short upturned nose, and thin down turned lips. Established in 1981, the CdLS Foundation exists to ensure early and accurate diagnosis of the syndrome, and help people with CdLS and others with similar characteristics make informed decisions throughout their lifetime. For information and support purposes, the CdLS Foundation publishes numerous educational materials, including a bimonthly newsletter entitled "Reaching Out," an album of photographs and stories about persons with CdLS, and a "Facing the Challenge" booklet for families new to the syndrome. The CdLS Foundation enlists the support and expertise of professionals from the fields of genetics, medicine, and psychology who comprise its scientific advisory committee (SAC). The CdLS Foundation also maintains a toll-free information and support line, promotes activities and media events that create public awareness of the syndrome, and coordinates a biannual conference for parents and professionals from around the world.

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