The Cornelia de Lange Syndrome (CdLS) Foundation is non-profit organization founded in 1981 by parents of children with CdLS. It’s the only organization in the country devoted to the syndrome. The Foundation serves more than 2,400 people with CdLS, 10,000 family members/caregivers, and 2,500 professionals. Its services are broken into the following categories:

Family Services:  Family Service Coordinators are available to provide support and guidance. Services include:

            •  Ask the Expert

            •  Connect with a Family

            •  Toll-free Help Lines

            •  Online Family Album and Story Bank

            •  Publications, including Management and Treatment Guidelines

In addition, the Foundation holds a biennial national family conference and five annual family gatherings throughout the country. A twice-yearly Multi-disciplinary Clinic for Adolescents and Adults takes place at Greater Baltimore Medical Center, and is free of charge.

Professional Development

The Foundation sponsors Scientific and Educational Symposiums in conjunction with its biennial family conference—taking place next in Lincolnshire, IL, June 2012. The day-long meetings bring together doctors, scientists and a range of interested professionals from around the world to share current research and stimulate collaboration. Continuing Medical Education credits and Continued Educational Units are offered.  

The Foundation also offers online self-study modules for professionals as well as a CdLS Diagnostic and Criteria Checklist (pictured), provided in notepad form free of charge. Call 800-753-2357 for information on online modules and to request your checklist. .

Research

The Foundation has a vision and researchers have the determination to understand CdLS and to find treatments to help people with the syndrome overcome the many challenges they face.

Through its Small Grants Program, the Foundation has funded several research projects, including studies to predict behavior problems, develop prenatal diagnostic markers, and investigate aging issues in adults with CdLS. This year, up to $15,000 in funding is available. (Email outreach@CdLSusa.org for an application, due April 15).

Additionally, the Foundation has established relationships with researchers at prominent medical and scientific institutions, including Greater Baltimore Medical Center, the University of California at Irvine, the Children’s Hospital of Philadelphia, and Saint Louis University School of Medicine. All four institutions were designated CdLS Centers of Excellence in 2008.

Awareness

Thousands of men, women and children remain undiagnosed and/or without support services.  In order to raise awareness of CdLS among the public, the Foundation produces awareness materials such as bookmarks, fliers, brochures, and public service announcements.

Additionally, national CdLS Awareness Day is observed on the second Saturday of May each year.

Want to learn more? The Foundation’s Web site helps parents and professionals stay current on events and research efforts, offers an extensive collection of vital information, and provides an easy connection to all of the Foundation’s resources and services.   Go to www.CdLSusa.org.