In what is an Australian first, The Down Syndrome Institute has been established to provide research and medical care for people with Down syndrome in Australia.

Launched by NSW and Federal Governments, the institute will ensure that the unique needs of people with Down syndrome are known, understood, valued and met.

Down Syndrome NSW CEO, Emily Caska said: “The Institute has been designed with and for people with Down syndrome and their families. We will partner with key health, research and innovation entities, universities, corporate leaders, government as well as key individuals and experts within Australia and internationally.”

The institute will spearhead Australia’s first annual Down Syndrome Register, a centralised knowledge bank, the Down Syndrome Medical Interest Group Australia, an innovation hub, as well as work towards Australia’s first Down Syndrome Clinic, she said.  

Down syndrome is considered a well known and recognisable disability in the broader community, however, the number of people with Down syndrome in Australia is unknown, there is no central knowledge bank, nor any dedicated Down syndrome research or medical interest community. As a result, Australia is well behind the US and the rest of the world in terms of investing in and delivering research, curating data and achieving optimal outcomes for people with Down syndrome.

Down Syndrome NSW, president Lorraine Clark said Down Syndrome NSW is a key founding partner of the Down Syndrome Institute, citing it as a significant step forward to meet the fundamental needs of people with Down syndrome in order to live a good life across all domains.

Ambassadors from around Australia who have been working with Down Syndrome NSW are backing the calls for more research and advocating for the cause, including, former cricketer Michael Clarke, pictured.

“Anything that can help our loved ones with Down syndrome live longer, happier and healthier lives has my full support and should be celebrated,” he said.