One of Western Australia's biggest philanthropic gifts is set to change the lives of children and families living with rare or undiagnosed diseases.
The Stan Perron Charitable Foundation has committed a landmark $221 million over the next decade along with Perth Children's Hospital Foundation ($25 million) and The University of Western Australia ($3 million) to fund the Rare Care Comprehensive Centre.
Drawing on the expertise of local, national and networks across the globe, WA is leading the way in rare and undiagnosed diseases care with such diseases affecting more than 300 million people globally, including over two million Australians and 63,000 children in WA.
The significant funding will address the urgent unmet needs of WA children and families living with rare and undiagnosed diseases, through the convergence of people, partnerships, platforms and policy to transform lives and systems.
UWA Medical School and Rare Care Medical Director Professor Gareth Baynam said building on the success of the existing Rare Care Centre and rare disease research experts in WA, it would integrate existing work and build a coordinated and comprehensive ecosystem to improve outcomes for children and families living with these 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," Professor Baynam said.
The Centre's integrated structure comprises clinical and cross-sector services, which will deliver coordinated care across health, education, disability and social services; research and innovation, to drive world-leading science, clinical trials and new technologies to improve diagnosis, treatment and care outcomes; and a rare care not-for-profit, to accelerate, translate and expand the impact of clinical and research activities and deliver initiatives such as family support programs and the Global Nursing Network for Rare Diseases.
The Centre has been co-designed by families, clinicians, researchers and cross-sector government and community partners, ensuring that lived experience is embedded in all aspects of the work and family needs drive the delivery of tangible outcomes.
It brings together multiple government sectors (health, education, disability and community services), UWA, Curtin University, The Kids Research Institute Australia, Harry Perkins Institute, Murdoch University and the Perron Institute for Neurological and Translational Science, along with community organisations in a unified and integrated approach.
The Rare Care Comprehensive Centre will build a future where children and families living with rare and undiagnosed diseases are no longer left behind.
Chair of the Stan Perron Charitable Foundation, Elizabeth Perron said the Board of the Foundation had recognised the outstanding work of the team at the Rare Care Centre and the 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," Ms Perron said.
"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 generous donation is a fitting legacy for WA businessman and philanthropist, Stan Perron, who founded his charity in 1978, dedicated to improving the health and wellbeing of Western Australian children.
