Information
Organization's Own Description:
The Cornelia de Lange Syndrome (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.
The CdLS Foundation is a national non-profit organization that has served people 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 is the only organization dedicated to CdLS in the nation. It distributes a number of publications to families and professionals caring for children with CdLS, and 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 a child with CdLS.
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