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Call for a national register of Australians with Down syndrome

Down Syndrome Australia is often asked about the population of people with Down syndrome in Australia. This is a difficult question to answer as no national registry exists, and the various states and territories collect data differently or not at all.

Given that the life expectancy of people with Down syndrome is growing, and that the number of babies born with Down syndrome has been steady to growing for over ten years, a national registry would seem an important and logical step. A registry would help with resource planning, much needed research and a much greater understanding of the needs and potential of Australians with Down syndrome. 

Down Syndrome Australia has therefore put together the fragmented information that currently exists to provide an evidence based estimate of the number of Australians with Down syndrome. We believe the population to be over 13,000 and growing. You can read our summary here.

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