CdLSA is a non-profit organisation which is run by volunteers, usually parents, who have a family member with CdLS. The Australian support group was formed in 1981 in Victoria, when three mothers met, and for the first time in many years were able to compare their experiences.
CdLS is a congenital syndrome, meaning it is present from birth. Most of the signs and symptoms may be recognised at birth or shortly thereafter. A child need not demonstrate each and every sign or symptom for the diagnosis to be made. In 1933, Dr. Cornelia de Lange, a Dutch paediatrician, described two children with similar features, one 17 months and the other 6 months, who were admitted within weeks of each other to Emma Children's Hospital. The first child had pneumonia. Her first year of life had been characterised by a lot of feeding difficulties and she was very small for her age, with a proportionately smaller head circumference. Dr. de Lange noted other unusual facial characteristics.
The Cornelia de Lange Syndrome Association (Australasia) Inc (CdLSA) is a family support organisation which exists to ensure the early and accurate diagnosis of CdLS, promote research into the cause and manifestations of the syndrome, and help people with a diagnosis of CdLS, and other with similar characteristics, make informed decisions throughout their lifetime.
The group was incorporated in 1995 and countries supported by CdLSA are Australia, New Zealand, Malaysia, Philippines, Singapore and other Pacific Nations. They do not receive any regular Government funding, and rely on membership fees for information dissemination via their newsletter "Keeping in Touch" (KIT). We also produce topic specific information packages, provide counselling, and host awareness activities.Read More»