PERTH’S RARE CARE CENTRE INSPIRING CHANGE WORLDWIDE
While the work of the Foundation is focused very much on WA, the impact of its support stretches well beyond our shores.
In this case, a medical milestone is underway in British Columbia, Canada, as BC Children’s Hospital looks to the innovative model of care pioneered at Perth Children’s Hospital (PCH).
BC Children’s Hospital, which serves the most populous province in Western Canada, is drawing inspiration from PCH’s Rare Care Centre to develop a new service catering to the needs of children and families affected by rare and complex diseases.
There are approximately 10,000 rare diseases known to exist worldwide, with a condition classified as “rare” if it affects less than one in every 2,000 people.
Most of these conditions first manifest in childhood but can be difficult to diagnose, with an estimated 50 per cent of patients misdiagnosed at least once before their condition is correctly identified.
Collectively, rare diseases impact an estimated 300 million people worldwide — including 63,000 children in Western Australia — and are responsible for approximately 60 per cent of childhood deaths in developed countries.
PCH’s Rare Care Centre was established with the support of the Stan Perron Charitable Foundation and is providing an integrated and responsive model of care that supports children and families impacted by rare diseases to live the best lives possible.
As well as providing each patient with a comprehensive and coordinated treatment plan and pathways, the Rare Care Centre’s model is designed to foster international collaboration and provide access to a global network of experts and families living with similar conditions.
This ground-breaking holistic, cross-sector care model has since been adopted and adapted by major hospitals overseas, including Royal Manchester Children’s Hospital in the United Kingdom and Amsterdam UMC in the Netherlands.
With BC Children’s Hospital and SingHealth in Singapore now joining this circle of international collaborators the PCH’s Rare Care Centre team hopes to extend its programs to better reach remote and regional communities.
They are also working to build upon the successes of the Rare Care Centre’s clinical service, which has already helped more than 100 WA families impacted by rare and undiagnosed diseases within its first 12 months of operation.
Gareth Baynam, Medical Director of the Centre, said his team was grateful for the Foundation’s support in addressing an issue with local and global implications for children’s health.
“It has given us the opportunity to help the children and families in WA and to lead through global partnerships to better help children and families on our planet,” Dr Baynam said.
Funding partners
The Rare Care Centre is a unique alliance between Child and Adolescent Health Service (CAHS) and the following philanthropic foundations:
Stan Perron Charitable Foundation
Angela Wright Bennett Foundation
McCusker Charitable Foundation (via Telethon Channel 7 Trust)
Perth Children’s Hospital Foundation
Photo credit: Adrian Fretwell from AF Creative
Published: January 2024