Rare Care Center Update 2026
- 2 days ago
- 3 min read
💜 Rare Care Centre Perth – A significant step forward for WA’s rare disease community
The Rare Care Centre at Perth Children’s Hospital has released its Year 4 Impact Report for 2025–26, highlighting significant growth in coordinated care and support for children and families living with rare and undiagnosed diseases across Western Australia.
For the NF community, this is particularly encouraging. Many families living with Neurofibromatosis understand the challenges of navigating multiple specialists, health services, schools, disability supports and other systems. The Rare Care Centre’s model is designed around bringing these services together and helping families navigate what can otherwise be a fragmented journey.
🌟 Some key achievements in 2025–26
• 411 children and families were supported through the Centre's Cross-Sector Care Coordination Program.
• Families were supported across an average of six CAHS teams, with some children requiring involvement from as many as 16 teams — demonstrating just how complex rare disease care can become.
• The Centre reported a 44% decrease in outpatient visits, 69% decrease in outpatient non-attendance and 61% decrease in inpatient bed days among supported families.
• The Nurse Navigator Program supported 78 children to date, with 30 currently receiving support. Nurse Navigators assist with care coordination, information, school liaison, GP access, mental health referrals, welfare and appointment coordination.
• An important resource is the Patient Passport. Sixty-two passports have now been completed, providing families with a concise summary of their child's medical, developmental and personal information to help communicate their needs across emergency care, schools, allied health and other services. The Passport is being rolled out more widely through the Cross-Sector Coordination Program in 2026.
• The Centre is also strengthening support around NDIS navigation, helping families translate complex medical information into evidence of functional need and supporting applications, reviews and access to appropriate services.
đź’ś Looking beyond medical care
One of the most positive aspects of the report is the Centre's increasing focus on the whole family.
The Centre has undertaken international work examining effective family support models and is now developing a WA-specific family support program. This includes plans for structured sibling support and the continuation of the Dad's Connect peer support group, which has grown to 30 fathers.
This recognition that rare disease affects the whole family — not just the person with the diagnosis — is an important development for our NF community.
🚀 A major investment in WA's rare disease future
Perhaps the biggest announcement is the establishment of the Rare Care Comprehensive Centre.
The report highlights a total of $249.1 million in committed funding, including $221.1 million from the Stan Perron Charitable Foundation, $25 million from the Perth Children's Hospital Foundation and $3 million from The University of Western Australia. The funding is intended to strengthen diagnosis, access to treatment and coordinated care for children and families living with rare and undiagnosed disease in WA.
This represents a significant investment in the future of rare disease care in Western Australia and provides an opportunity to build stronger connections between health, disability, education, research and community organisations.
đź’ś What does this mean for NF?
The report does not specifically identify Neurofibromatosis as a disease group within its reported outcomes, so we should not suggest that the Centre currently provides an NF-specific program.
However, the model is highly relevant to the challenges experienced by many NF families — particularly around care coordination, navigating multiple services, education, disability supports, transitions and ensuring families do not have to repeatedly tell their story.
For NFAWA, this presents an important opportunity to continue building relationships with the Rare Care Centre and advocate for the needs and experiences of Western Australian families living with NF.
We will continue to follow the development of the Rare Care Comprehensive Centre and look for opportunities to ensure that NF is part of the conversation as WA's rare disease system continues to grow.
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