Making Rare Diseases Count 2026

The Rare Care Centre (RCC) was established at Perth Children’s Hospital in February 2022 to provide a new model of support for children and families affected by rare and undiagnosed diseases. It operates through a statewide, cross-sector, inter-agency care coordination programme that has already demonstrated value in improving outcomes and reducing costs to the health system.Rather than focusing solely on the hospital setting, the RCC coordinates and advocates across health, education, disability and social care systems. A nurse navigator programme extends reach via telehealth for families with lower levels of complexity, while a hub in northwestern Western Australia is expanding access in one of the country’s most remote regions (see Figure 10). Improving outcomes and delivering value Analysis of discharged patients from the RCC highlights significant benefits. Coordinated care reduces hospital visits, travel requirements and stress for families while improving access to disability and welfare entitlements. Families living outside metropolitan Perth save an average of AUD $5,200 (US $3,500) annually in travel-related costs, and disability support funding increases have enabled greater access to therapies and equipment.46 The health system also benefits. Outpatient appointments fell by 33%, hospital bed days decreased by 33% and emergency department presentations went down by 40%. After programme costs, this equates to net savings of AUD $13,400 ($8,970) per child – a return of nearly AUS $5 for every dollar invested. Building capacity and advancing innovation Beyond clinical service delivery, the RCC invests in education, workforce development, research, peer support and system reform. It hosts the Global Nursing Network for Rare Disease, connecting nurses worldwide to share expertise and strengthen leadership. It has launched educational tools for schools, including animations and e-learning resources to improve understanding and support for children in classrooms. The RCC is also advancing digital innovation through platforms such as Unlocking Treatment Options Personalized In-Time Access (UTOPIA), which applies AI and digital tools to generate care summaries and computational natural histories for children with rare and undiagnosed diseases. Early results show it can halve the time needed to create personalized care plans, and it is now being adopted nationally in Singapore.47 The RCC is now evolving into a Comprehensive Rare Care Centre, integrating clinical and cross-sector services, research, innovation and a dedicated not-for-profit entity. This next phase aims to transform how rare and undiagnosed diseases are diagnosed, treated and supported, while ensuring that children and families remain at the centre of care. Figure 10 – Rare Care Centre: 2022–present Source: Rare Care Centre, Perth Children’s HospitalCASE STUDY 6 Rare Care Centre at Perth Children’s Hospital in Western Australia Rare Care Centre was established at Perth Children’s Hospital. It has supported more than 400 families to date with a 5:1 return on investment.2022 Nurse Navigator programme was introduced, providing telehealth-based support and care coordination for 50+ families in Western Australia.2024 Planned launch of the Rare Care Comprehensive Centre, a non-profit designed to fully integrate cross-sector services, research and innovation.2026Global Nursing Network was launched. It now connects more than 700 nurses from 63 countries to share expertise and strengthen leadership.2023 Development of the Pilbara Hub began, co-designed with local communities to expand access to rare disease care in remote regions of the country.2025