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About CdLS

About the CdLS Foundation

The Cornelia de Lange Syndrome (CdLS) Foundation is a 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 others with similar characteristics, make informed decisions throughout their lives.

The CdLS Foundation is a national non-profit organization that has served people with CdLS and their families since 1981. The Foundation’s mission is reflected in its slogan: Reaching Out, Providing Help, and Giving Hope.

The Foundation is the only organization dedicated to CdLS in the nation. It distributes a number of publications to families and professionals caring for children with CdLS, and hosts meetings and conferences where researchers and families can meet to exchange information. The Foundation also acts as a facilitator between families and professionals, utilizing a team of professionals who lend their expertise to those caring for a child with CdLS.

Among the many services the Foundation provides are:

Toll-free “HELP” Lines

Trained staff answer questions personally and offer individualized support over the phone to families and professionals.

Connect with a Family

Staff receives 150 requests each year to connect families with others in their area.

Ask the Expert

A caring group of 50 medical and educational specialists with experience treating children with CdLS is available to help families in regard to a child’s health, development and education. Using a form on our Web site or contacting the Foundation office by phone, families initiate 150 distinct inquiries each year.

Education and Information

Our quarterly newsletter, Reaching Out, has been published continuously since 1977. Other publications cover such topics such as speech, delayed walking, behavioral challenges, developmental delays, gastrointestinal issues, and bowel abnormalities. We also provide specialty publications for new parents and grandparents.

Multi-Specialty Clinic for Adolescents and Adults

Two clinics are offered each year at Greater Baltimore Medical Center. Children over age 13 can participate in a full day of free consultations with professionals in a range of specialties, including gastroenterology, gynecology and psychiatry.