CdLS Foundation USA

In 1977, Sue Anthony (a mother of a child with Cornelia de Lange Syndrome) published an informal, hand-typed newsletter entitled Reaching Out to share life experiences and medical information with the caregivers and professionals of those diagnosed with the rare syndrome, Cornelia de Lange Syndrome (CdLS). Three years after the first issue of Reaching Out was published, 18 families and one doctor responded to an announcement about a gathering in Maryland for families of a child with CdLS. In 1981, the Cornelia de Lange Syndrome Foundation was incorporated. As the only organization in the United States dedicated to serving individuals with the rare genetic disorder, the CdLS Foundations mission is 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 establishes a communit...