MAJOR DONATION TO TRANSFORM THE LANDSCAPE OF RARE AND UNDIAGNOSED DISEASE CARE
L-R: Sue Baker - RCCC Co-Director & Research Lead, Professor Gareth Baynam - RCCC Medical Co-Director & Clinical Lead, Stephen Hille - RCCC Consumer Co-Lead, Elizabeth Perron - Executive Chair Stan Perron Charitable Foundation, Hon Meredith Hammat MLA Minister for Health, Amanda, Craig, Hollie and Maddi Gilpin and Kaila Stevens - RCCC Program Lead (Non-Clinical) attend the RCCC major funding announcement.
One of Western Australia’s largest philanthropic gifts is set to change the lives of children and families living with Rare and Undiagnosed Diseases.
The Stan Perron Charitable Foundation has announced a landmark $221.1 million commitment over the next decade to establish the Rare Care Comprehensive Centre (RCCC) — a world-first initiative that will deliver life-changing care and system-wide improvements for children and families affected by Rare and Undiagnosed Diseases.
This extraordinary commitment is part of a collaborative investment alongside the Perth Children’s Hospital Foundation and The University of Western Australia, positioning Western Australia as a global leader in Rare and Undiagnosed Diseases care and research.
Transforming Lives Through Collaboration
Rare and Undiagnosed Diseases affect more than 300 million people worldwide, including over two million Australians and an estimated 63,000 children in Western Australia.
The RCCC will unite local, national and international expertise to address the urgent unmet needs of those living with these complex and often misunderstood conditions.
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 Rare and Undiagnosed Diseases.”
“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.”
A Comprehensive Model of Care
The RCCC’s integrated structure is built around three core pillars:
Clinical and Cross-Sector Services – delivering coordinated 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 outcomes.
Rare Care Not-for-Profit – accelerating, translating and expanding the impact of clinical and research activities, while delivering family support programs and initiatives such as the Global Nursing Network for Rare Diseases.
Co-designed by families, clinicians, researchers, and cross-sector partners, the RCCC embeds lived experience in every aspect of its work, ensuring that the voices of children and families drive meaningful, lasting change.
A Unified Vision for Western Australia
The RCCC represents an unprecedented collaboration across government, research and community sectors — including 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.
Together, these partners are creating a unified, world-leading model of care where children and families living with Rare and Undiagnosed Diseases are no longer left behind.
A Legacy of Care and Commitment
Elizabeth Perron, Executive Chair of the Stan Perron Charitable Foundation, said the Board was proud to continue her father’s vision of supporting initiatives that make a profound difference in children’s health.
“The Board of the Foundation had recognised the outstanding work of the team at the Rare Care Centre and identified an opportunity for this to be expanded and built upon.
“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.
“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.”
This landmark commitment will ensure that future generations of children and families affected by Rare and Undiagnosed Diseases receive the care, support and hope they deserve — right here in Western Australia.
“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.”
— Professor Gareth Baynam
Published: October 2025