Mission: Reaching Out, Providing Help and Giving Hope.
Cornelia de Lange Syndrome is a little-known genetic birth defect that causes children to develop slowly, both mentally and physically. With the help of hundreds of volunteers, the Foundation is able to provide personal support to every family who requests it.
Target demographics: individuals with CdLS and related diagnoses
Direct beneficiaries per year: 5,300 individuals with CdLS and their family members
Geographic areas served: United States
Programs: Publications, family service support phone lines, national family conferences, Foundation sponsored family gatherings across the country