CORNELIA DE LANGE ORGANIZATIONS
Cornelia De Lange Syndrome Foundation
800-223-8355, 860-676-8166
Caring and knowledgeable Family Service Coordinators provide individuals with CdLS and their families a wealth of services, support and information –– most of which are at no cost. Calls placed to the support team are answered by caring professionals who listen, answer questions based on years of experience and offer individualized support over the phone and via email.
The foundation sponsors CdLS Clinics which provide families with an invaluable head-to-toe evaluation by a full complement of experts—all in one day. Currently, there are five CdLS Clinics in the United States: The Multi-disciplinary Clinic for Adolescents and Adults at Greater Baltimore Medical Center; the Center for CdLS and Related Diagnoses at Children’s Hospital of Philadelphia (CHOP); Shriners Hospital for Children-Salt Lake City, UT; St. Louis Children’s Hospital in St. Louis, MO; and Boston Children’s Hospital, Cornelia de Lange Syndrome (CdLS) and Related Disorders Clinic.
Each clinic provides a comprehensive, evaluation for individuals with CdLS. Participants receive one-to-one consultations with specialists. Specialists provide a multidisciplinary comprehensive evaluation of the individual with CdLS, formulate a treatment plan for the family to share with their medical professionals, increase knowledge of CdLS in caregivers, provide strategies for handling the challenges their loved ones face and collect data that will help educate physicians about common medical issues in CdLS, trends and prevention.
The Foundation offers a travel reimbursement to U.S. families attending any of the clinics. This reimbursement is available to a family only one time. For more information on any of the clinics, contact Deirdre at