Health
Rare Care Pilbara Hub

The Rare Care Pilbara Hub supports children living with rare and undiagnosed diseases (RUDs) and their families by delivering coordinated, cross sector place-based care.

When the Hanrine Foundation was initially approached by the Perth Children’s Hospital Foundation, it recognised the potential for a more transformative approach. That insight led to the development of a dedicated Pilbara Hub, one of the first of its kind globally.

Through its early involvement and ongoing association, the Foundation helped shape a program that now provides:

• Tailored support for families navigating complex care systems
• Access to services across health, education, disability, and mental health
• Localised care coordination models and upskilling for regional professionals
• A blueprint for improving care for rare and undiagnosed diseases in remote settings

By linking metropolitan expertise with regional knowledge, the Pilbara Hub creates a stronger, more connected system for children with rare diseases that is both locally responsive and globally informed.