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.
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.
The group was incorporated in 1995 and countries supported by CdLSA are Australia, New Zealand, Malaysia, Philippines, Singapore and other Pacific Nations. We do not receive any regular Government funding, and rely on membership fees for information dissemination via our newsletter "Keeping in Touch" (KIT). We also produce topic specific information packages, provide counselling, and host awareness activities.
Better Start for Children with Disability
From 1 January 2013, children who are aged under 6 years and have been diagnosed with Prader Willi, Williams, Angelman, Kabuki Make Up, Smith-Magenis, CHARGE, Cornelia de Lange or Cri du Chat syndromes or microcephaly will be able to register to access early intervention funding of up to $12,000 (up to a maximum of $6,000 per financial year) under the Better Start for Children with Disability (Better Start) initiative.
ANGIE AND NICK FARR-JONES
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