$700k boost for world-first Rare Care Pilbara Hub
- Perth Children's Hospital Foundation
$700k boost for world-first Rare Care Pilbara Hub
- Perth Children's Hospital Foundation
Funding to bring specialist support closer to home for WA kids with rare and undiagnosed diseases
Leading global lithium producer PLS has committed more than $700,000 to Perth Children’s Hospital Foundation (PCHF) in support of the world-first Rare Care Pilbara Hub, improving access to specialist care and support for children living with rare and undiagnosed diseases across the region.
The Pilbara Hub, which began delivering its first clinics in February this year, is the first centre of its kind in the world for children with rare and undiagnosed diseases.
Part-funded by PCHF, the Hub brings together expertise across health, education, disability, NDIS, mental health and community services, with the aim of improving the early detection and diagnosis of rare diseases in regional and remote communities.
Rare diseases are the leading cause of death in children. While each condition is rare, they are collectively common, affecting around 63,000 children across WA, including around 1,700 children in the Pilbara.
Families living in regional and remote communities often face additional challenges accessing specialist healthcare, with many requiring frequent travel to Perth for appointments and ongoing care.
Medical Director of the Rare Care Centre, Professor Gareth Baynam said rare and undiagnosed diseases were often serious, lifelong and difficult to diagnose.Â
“The diagnosis journey takes five to seven years on average, with difficulty diagnosing rare diseases,” Prof. Baynam said. “The Pilbara Hub of the Rare Care Centre supports care closer to home and on country for children with severe health inequity through a cross-sector approach that joins up care across health, education, disability and community services.
“This global first provides a template for other remote regions, in Australia and internationally.”
Designed to address healthcare disparities for children living with rare and undiagnosed diseases, the Pilbara Hub provides culturally tailored and safe care on Country and closer to home.
Pilbara Hub is now operating bi-monthly clinics in Newman, Karratha and Port Hedland, with over 40 referrals accepted into the program and more than 30 children seen in clinics to date. Over half of referrals are children identifying as Aboriginal or Torres Strait Islander.
Tailored to each family’s needs, specialised support is delivered through a cross-sector team including a paediatrician, clinical nurse specialist, teacher and NDIS local care coordinator, with the Perth-based Rare Care Centre offering additional support remotely.
PCHF CEO Carrick Robinson said the funding would help to expand PCH’s world-leading Rare Care Centre model into the Pilbara, making specialist care and support more accessible for children and families living in the region.
“Thanks to PLS, this $705,000 investment will help us to support locally based healthcare roles, and education and training for frontline service providers at the Pilbara Hub.
“By bringing different experts and services together, the Hub can help families feel more supported and less alone in navigating the complex care needs of a rare or undiagnosed disease.”
Trinh Tucker, mum to nine-year-old Savannah, knows firsthand the difference the Rare Care Centre can make for families navigating an ultra-rare diagnosis.
“When Savannah was diagnosed with TRAPPC9, we felt incredibly isolated and alone, and needed to find our community,” Trinh said.
“The Rare Care Centre has been amazing in supporting us through every aspect of Savannah’s journey, from accessing services and navigating the NDIS to connecting us with the right support. We’re so excited that the Pilbara Hub will help more regional families access the same care and opportunities we have had, because every child deserves to feel included.”
Co-designed with a local advisory group, including families with lived experience, further expansion for the Pilbara Hub is planned throughout 2026, strengthening referral pathways, expanding services and building the evidence base for the program and its long-term impact.
Services offered through the Pilbara Hub include medical assessment and coordination of management, specialist and allied health coordination, school engagement and advocacy and NDIS access and support, including plan reviews and coordination.
PLS Chief Executive Officer Dale Henderson said: “PLS is proud to support the Pilbara Hub and the difference it will make for children and families across the region.
“The Pilbara has been home to our operations for more than a decade, and we’re committed to supporting the health and wellbeing of the communities where our people live and work.
“Through our partnership with Perth Children’s Hospital Foundation, we’re helping strengthen local healthcare capability and support families navigating rare and undiagnosed diseases.”
Since 2022, the Rare Care Centre has supported more than 650 children and families living with rare and undiagnosed disease across Western Australia.
PCHF is investing $2 million in the Pilbara Hub over five years, with major funders including the Hanrine Foundation and PLS.