Statewide hub for kids with rare, complex illnesses opens

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Queensland children will have a place to access potentially life-saving trials.


The Queensland Children’s Hospital is now home to a statewide hub designed to give children living with rare diseases and complex illnesses safe, timely access to new and potentially life-changing treatments. 

The ACTION (Advanced therapies and Clinical Trials InnovatiON) Centre opened on Friday, backed by an initial $400,000 investment from the Children’s Hospital Foundation. 

Stage one will build capacity and capability at the QCH to support the delivery of advanced therapies and help attract global research partnerships to support the centre into the future.  

Some advanced therapy clinical trials are currently not available in Queensland, with families having to travel interstate or overseas to access these potentially life-saving treatments for their children.      

“Advanced therapies, such as gene therapy and cell therapy, are transforming the way childhood genetic diseases are treated,” said Children’s Health Queensland’s CEO Frank Tracey.  

“They can correct or compensate for the underlying genetic abnormality causing a disease, or regenerate, repair or replace damaged cells or tissues in diseases such as cancer, spinal muscular atrophy and inherited retinal blindness. 

“By partnering with advanced therapies and clinical trial leads from across Australia and the world, we will not only improve access to novel therapies, but also drive the rapid translation of research into life-changing treatments and further enhance the clinical expertise within the Queensland Children’s Hospital.” 

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