Landmark investment transforms rare disease care for WA families

Sue Baker, Rare Care Centre Program Director, Prof Gareth Baynam, Rare Care Centre Program Director, Steve Hille, Elizabeth Perron AM, Executive Director, Stan Perron Charitable Foundation, Hon Meredith Hammat MLA Minister for Health; Mental Health, the Gilpin family and Kaila Stevens, Rare Care Centre Program Lead (non-clinical)

A historic philanthropic donation will transform the diagnosis, treatment and support of children and families across Western Australia living with rare and undiagnosed disease (RUD).

The Stan Perron Charitable Foundation has pledged $221.1 million over the next decade to establish the Rare Care Comprehensive Centre (RCCC) – a vital, world-leading hub at Perth Children’s Hospital – to deliver holistic, lifelong care for those affected by RUD.

This transformative gift is supported by additional contributions from the Perth Children’s Hospital Foundation ($25 million) and the University of Western Australia ($3 million).

Rare disease affects more than 300 million people globally, including over two million Australians and 63,000 children in WA.

The RCCC will address the urgent and unmet needs of these families by creating a coordinated network of care, spanning diagnosis, treatment, support, and wellbeing.

A global first in rare disease care

Building on the success of Perth Children’s Hospital’s existing Rare Care Centre and its internationally recognised research expertise, the RCCC is a world-first initiative.

It will integrate services across health, education, disability, and social sectors, ensuring families receive comprehensive and continuous support.

The RCCC is structured around three core pillars:

• Clinical and cross-sector services: delivering coordinated care across multiple sectors.
• Research and innovation: advancing cutting-edge science, clinical trials, and technologies.
• Rare Care not-for-profit: expanding impact through family support programs and initiatives such as the Global Nursing Network for Rare Diseases.

“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,” said Professor Gareth Baynam, Rare Care Centre Medical Director, Perth Children’s Hospital.

“RCCC will deliver support across the full journey for families and just as importantly, change systems so that future families no longer have to face the same challenges.”

Designed by families, for families

The RCCC has been co-designed by families, clinicians, researchers, and community partners, ensuring lived experience is embedded in every aspect of its work. This collaborative model places family needs at the heart of service design and delivery.

The initiative brings together a powerful alliance of institutions, including the University of Western Australia, Curtin University, Murdoch University, the Perron Institute, Harry Perkins Institute of Medical Research, and The Kids Research Institute Australia, alongside key government and community organisations.

Voices of leadership

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.”

Child and Adolescent Health Service (CAHS) Acting Chief Executive Michael Hutchings expressed his gratitude to all partners and praised the vision of the Rare Care Centre team.

“I would like to thank the many dedicated CAHS clinicians, researchers and staff who have worked tirelessly for many years to improve outcomes for families living with RUD.”

“This extraordinary financial contribution from the Stan Perron Charitable Foundation, and the support and collaboration of all funding and research partners gives us a unique opportunity to deliver life-changing benefits for families.

“Their support will ensure Perth Children’s Hospital, through the Rare Care Comprehensive Centre, will continue to be a world leader, setting the benchmark for care standards in this important area.”