Western Australia has welcomed a landmark philanthropic pledge that will reshape the future of rare and undiagnosed disease care across the state.

The Stan Perron Charitable Foundation has committed an extraordinary $221 million over the next decade to establish the Rare Care Comprehensive Centre (RCCC) at Perth Children’s Hospital.

The centre will be the first of its kind globally, offering holistic, lifelong support to children and families affected by rare diseases.

Dr May Aung-Htut, who leads rare disease therapeutics at the Personalised Medicine Centre at Murdoch University and the Perron Institute, described it as “a lifeline for families.”

“This is so much more than a donation – it’s a declaration that every child deserves answers, dignity and care,” said Dr Aung-Htut.

The Rare Care Comprehensive Centre will be a beacon of hope for families who have spent years trying to navigate fragmented health and social systems.

The donation by the Stan Perron Charitable Foundation is bolstered by additional contributions from the Perth Children’s Hospital Foundation ($25 million) and the University of Western Australia ($3 million).

The RCCC will see leading rare disease scientists at Murdoch University collaborate with those at Curtin University, the Perron Institute, the University of Western Australia, Harry Perkins Institute of Medical Research, and The Kids Research Institute Australia.

Elizabeth Perron, Chair of the Stan Perron Charitable Foundation, said the donation honours her father’s legacy.

“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.”

Rare diseases affect more than 300 million people globally, including over two million Australians and 63,000 children in WA. The RCCC aims to address the urgent and unmet needs of these families through a coordinated network of care that spans diagnosis, treatment, support and wellbeing.

Structured around three core pillars – clinical and cross-sector services, research and innovation, and a not-for-profit arm – the RCCC will also expand its reach through initiatives like the Global Nursing Network for Rare Diseases.

The Personalised Medicine Centre, known for its pioneering work in rare disease research, will play a key role in the RCCC’s Treatments and Trials Flagship.

“We’re proud to contribute our expertise to a centre that will not only transform care in WA but set a global standard,” Dr Aung-Htut said.

The RCCC builds on the success of Perth Children’s Hospital’s existing Rare Care Centre. It has been co-designed with families, clinicians, researchers and community partners to ensure lived experience is embedded in every aspect of its work.

“This is the kind of collaboration that changes lives,” Dr Aung-Htut said.

“It’s a moment of profound significance for WA, and we’re honoured to be part of it.”

Learn more about the Personalised Medicine Centre