Who We Are

The Cornelia de Lange Syndrome (CdLS) Foundation

The CdLS Foundation is a national non-profit organization that has served individuals 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 distributes a number of publications to families and professionals caring for individuals with CdLS, as well as 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 an individual with CdLS.

Tax ID Number: 06-1057497

The Foundation is the only organization dedicated to CdLS in the nation.

Our Mission

The 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.

Our History

Cornelia Catharina de Lange was born in Alkmaar, Holland, in 1871.  She was the fourth woman in the Netherlands to write a medical thesis. In 1933, she immortalized her name when she reported on two unrelated children with similar features–one 17 months, the other six months–who had been admitted to the hospital within weeks of each other.

In 1977, Sue Anthony published an informal, hand-typed newsletter entitled Reaching Out to share life experiences and medical information with other caregivers and professionals. 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. This small group generated enough energy to conceive a unique family support organization, one that integrated professionals as equal members willing to share information and support. By the end of the following year (1981), the Cornelia de Lange Syndrome Foundation was incorporated and received not-for-profit status and named Dr. Laird Jackson, a geneticist at Jefferson Medical College in Philadelphia, its first medical director.

That gathering in Maryland went on to become an annual event. For four years, the gathering increased in numbers of families and professionals, until the size called for a larger venue. In 1985, the Foundation hosted its first conference in Indianapolis, IN, and introduced the format that exists today.

Centers for Excellence

The CdLS Centers for Excellence program recognizes demonstrated excellence and outstanding achievement in research and/or clinical work related to CdLS.The designations belong to the Greater Baltimore Medical Center, Saint Louis University School of Medicine, Children’s Hospital of Philadelphia, the University of California, Irvine, and Stowers Institute for Medical Research.
The work at these institutions has changed the landscape of what is known about CdLS and how it can be managed.

CdLS Heroes

The CdLS Foundation is proud to honor those who provide exemplary care, generosity and support for individuals with CdLS and their families.

The CdLS Foundation relies on the generosity of families, friends and the community for support. We are proud to honor these individuals and groups who give so much of their time and effort to advance research, improve care and enable valued programs to continue nationwide..