Rare Care gift makes WA history.
- Perth Children's Hospital Foundation
Rare Care gift makes WA history.
- Perth Children's Hospital Foundation
One of WA’s biggest-ever gifts is set to transform the lives of kids and families living with rare or undiagnosed diseases.
The Stan Perron Charitable Foundation has committed a landmark $221.1 million over the next decade, alongside contributions from Perth Children’s Hospital Foundation ($25 million) and The University of Western Australia ($3 million), to establish the Rare Care Comprehensive Centre (RCCC).
Rare and undiagnosed diseases affect more than 300 million people worldwide, including over two million Australians, and 63,000 children in WA.
This extraordinary investment will help meet the urgent needs of WA children and families affected by these conditions, drawing on local, national, and global expertise to ensure WA leads the world in rare and undiagnosed disease care.
Rare Care Medical Director Professor Gareth Baynam said, “Building on the successes of the existing Rare Care Centre and rare disease research experts in WA, this is the catalyst that will integrate existing work and build a coordinated and comprehensive ecosystem that will truly improve outcomes for children and families living with RUD.
Rare Care Medical Director Professor Gareth Baynam.
“The Rare Care Comprehensive Centre will be the first of its kind in the world and will deliver support across the full journey for families – from diagnosis through to treatment, care, support and wellbeing, and just as importantly change systems so that future families no longer have to face the same challenges.”
The RCCC has been co-designed by families, clinicians, researchers and cross-sector government and community partners, ensuring lived experience shapes every aspect of its work and that family needs remain at its heart.
The RCCC will be built around three core pillars:
- Clinical and Cross-Sector Services – coordinating care across health, education, disability and social services.
- Research and Innovation – driving world-leading science, clinical trials and new technologies to improve diagnosis, treatment and care.
- Rare Care Not-for-Profit – accelerating the impact of clinical and research work through family support programs, community partnerships, and initiatives such as the Global Nursing Network.
PCHF CEO Carrick Robinson said: “We’re honoured to be part of the new Rare Care Comprehensive Centre – made possible through the Stan Perron Charitable Foundation’s truly transformational gift. PCHF is proud to contribute $25 million to help create a better future for the 63,000 kids living with a rare or undiagnosed condition. Co-designed with families, the RCCC will support kids through every stage of their journey – from diagnosis and treatment to care and wellbeing – while also driving research and innovation so that no child is left behind.”
Elizabeth Perron, Chair of the Stan Perron Charitable Foundation said: “Western Australia is so fortunate to have world-class researchers and practitioners who work tirelessly to address some of the most complex and rare diseases that affect children around the world.
Hollie and her mum Amanda. Hollie is one of 63,000 children in WA who live with a rare disease.
“The Stan Perron Charitable Foundation is very pleased to have the opportunity to provide direct support for their important work, ensuring that Western Australia remains at the forefront of this vital field of medical research.”
The RCCC brings together government sectors (health, education, disability and community services), UWA, Curtin University, The Kids Research Institute Australia, Harry Perkins Institute of Medical Research, Murdoch University and the Perron Institute for Neurological and Translational Science, along with community organisations.
