Rare Care Centre
Who we are
Rare Care – the Clinical Centre of Expertise for Rare and Undiagnosed Diseases (Rare Care Centre) aims to help children with rare and undiagnosed diseases (RUD), and their families, live the best lives possible. The Rare Care Centre provides a cross-sector care coordination service which aims to holistically address the concerns or challenges experienced by children with RUD and their families across Western Australia.
The cross-sector team is designed to help bridge gaps through care coordination, navigation to the right service, integration of services and advocacy when needed, without duplicating any of the services already being received.
The Rare Care team includes:
- Perth Children’s Hospital Doctors and Nurses
- General Practitioner (GP)
- Genetics Counsellor
- Mental Health Nurse
- Aboriginal Health Worker
- School Educator
- Welfare Support Worker
- NDIS Support Coordinator
- Department of Communities Coordinator.
Alongside its care coordination service, the Rare Care Centre also focuses on:
- Education and training
- Digital technologies
- Workforce capacity building
- Advocacy
- Peer to peer support
- Connection to global expertise, research and clinical trials.
Referrals
During the first 12 months of the clinical service, referrals will be limited in number as we build up the new service to ensure it meets the needs of children with RUD and their families. Information on eligibility and criteria will be available when referrals open more broadly.
More information
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Funding partners
The Rare Care Centre is a unique alliance between Child and Adolescent Health Service (CAHS) and the following philanthropic foundations: