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 advancing 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.

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 through the Western Australian Rare Disease Research Consortium 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 WA Rare Disease Research Consortium brings together community, government systems, multiple universities and medical research institutes and industry under a Rare and Undiagnosed Research Framework and set of Principles. Under this framework, launch flagships include: 1. Awareness (community and systems); 2. Diagnostics; 3. Treatment, Trials and Manufacturing; 4. Models of Care and Care Pathways and 5. Artificial Intelligence.

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.

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