WA’s Rare Care Centre: Supporting families living with rare and undiagnosed diseases
TSA is pleased to highlight the incredible work of the Rare Care Centre, a clinical service supporting those living with rare and undiagnosed diseases, including TSC, in WA.
What is the Rare Care Centre?
The Rare Care Centre, launched in 2022, helps children and families navigate the challenges of living with a rare or undiagnosed condition. Their team works alongside existing healthcare providers to fill gaps in support, coordinate care, and connect families with essential services.
The Centre offers two key clinical service programs:
- Model of Care Cross-sector Program – Helping families manage care across health, education, and disability services.
- Nurse Navigator Program – Providing dedicated nursing support to help families find and navigate the right resources and services.
Beyond clinical care, the Rare Care Centre also champions research, education, family and peer support, and advocacy to improve systems and outcomes for people living with rare diseases.
How the Rare Care Centre helps families
The Rare Care Centre is currently based at the REACH Clinic located at North Metropolitan TAFE, Mt Lawley, and offers a statewide, family-centred approach to care. Their Model of Care Cross-sector Program connects families with the supports they need, such as:
-Education and school support
-Mental health and wellbeing resources
-NDIS and disability services
-Genetic counselling
-Primary care and medical specialists
The Nurse Navigator Program is a free telehealth service led by an experienced Clinical Nurse Specialist that connects families with relevant services, information, and resources. The service helps families:
-Coordinate care for better health outcomes
-Understand their child’s condition and available treatments
-Find local and national clinical and non-clinical support services
-Navigate medical, educational, and disability systems
How to access the rare care centre
Access to the Centre is via referral from paediatricians, Perth Children’s Hospital or Child and Adolescent Community Health treating teams. Further information can be found here: Rare Care Centre
Contact the Rare Care Centre
Email: [email protected]
