Remote hub brings rare disease care closer to home for Pilbara children

Children living with rare diseases in Western Australia’s remote Pilbara region are now receiving specialist care through a decentralised hub model that embeds expert multidisciplinary support within local communities, according to a commentary published in The Lancet Regional Health – Western Pacific. The Pilbara Rare Care Hub, which commenced in 2026, is designed to overcome the geographic and structural barriers that have long left families in the region travelling more than 1500 kilometres to access tertiary paediatric services.

The Pilbara spans more than 500,000 square kilometres of north-western Australia. An estimated 2000 children in the region are living with a rare disease, yet service delivery has been constrained by workforce shortages, fragmented care pathways and a dependence on metropolitan models that require travel for necessary care. These challenges fall disproportionately on Aboriginal children and families living in dispersed communities, compounding existing health inequities, the authors write.

In Western Australia, an estimated 63,000 children are living with a rare disease. The state’s metropolitan-based Rare Care Centre, established in 2022, provides cross-sector care coordination for these children and families. However, for many regional patients, that support has been limited to telehealth reviews, with little local perspective or continuity of care, reducing access to multidisciplinary support for children with complex lifelong conditions.

The commentary argues that such metropolitan-centric models are poorly adapted to the realities of regions like the Pilbara, where they remain limited in providing culturally relevant, local and sustainable support. The consequence, the authors note, is that families in remote areas face fragmented management, financial burden and persistent health inequity, even where a centralised coordination service exists in the state capital.

The Pilbara Rare Care Hub takes a different approach. Rather than flying families to Perth or relying solely on telehealth, the model decentralises expert multidisciplinary rare disease care by integrating it with the local workforce and adapting service delivery to the region. Flexible referral pathways and a rotating outreach model improve access to specialist care while enabling continuity across geographically dispersed communities. Unlike traditional outreach services, the hub embeds local clinicians, educators, disability support providers and social services within the model itself, with the aim of strengthening local capability and reducing fragmentation between sectors.

Governance is also structured differently. Shared governance with regional health services allows the model to adapt to local priorities and workforce capabilities, while partnerships with Aboriginal Community Controlled Health Organisations and Aboriginal health care workers are intended to support culturally responsive care. The authors present this combination of local embedding, shared decision-making and specialist outreach as the core of the model’s design, rather than a simple extension of city-based services into the bush.

Early implementation of the hub in 2026 has begun to demonstrate high consumer acceptability and improved continuity of care closer to home, according to the authors, who also express hope that the model will yield a return on investment comparable to that of the metropolitan Rare Care Centre. They are careful, however, to frame these as early observations: the commentary states that evaluation remains critical to determine how the model influences equity, continuity of care, workforce sustainability and health system outcomes over the long term.

Beyond its immediate regional significance, the authors position the Pilbara hub as a scalable framework for decentralised rare disease care in geographically challenging settings where metropolitan tertiary models are restricted in delivering equitable access. They argue that implementation science approaches can identify the transferable components of the model for diverse regional settings, including those with limited workforce capacity and substantial Indigenous health inequities, and that the model may help inform policy and frameworks for decentralised rare disease care relevant to dispersed populations globally.

The commentary places the Pilbara experience in a wider Western Pacific context, noting that children with rare diseases in dispersed, underserviced communities across the region continue to face substantial inequity in access to specialist care. Through planned evaluation and regional reporting, the model’s impact on equity, continuity of care and workforce sustainability will be tracked, and the authors suggest that as health systems in the region seek strategies to reduce geographic inequity, the Pilbara approach may offer a scalable, transferable template for decentralised rare disease care in comparable settings.

For the estimated 2000 Pilbara children living with a rare disease, the practical significance of the model lies in its promise of specialist multidisciplinary input delivered closer to home, coordinated with the local services families already use. Whether that promise translates into measurable long-term gains in equity and health outcomes will depend on the evaluations the authors themselves call for as the hub matures.

Subject of Research: A decentralised, locally embedded rare disease care hub model for children in remote Western Australia

Article Title: Decentralised rare disease care for children living in remote areas: the Pilbara Hub Rare Care model in Western Australia

Article References: MacDonald, B., Burmaz, M., Bacon, M., Bolton, S., Baker, S., Stevens, K., Newell, A., Baxter, M., Thetford, A., & Baynam, G. (2026). Decentralised rare disease care for children living in remote areas: the Pilbara Hub Rare Care model in Western Australia. The Lancet Regional Health – Western Pacific, 75, Article 102006. https://doi.org/10.1016/j.lanwpc.2026.102006

Image Credits: AI Generated

DOI: 10.1016/j.lanwpc.2026.102006

Keywords: rare disease, Pilbara, Western Australia, paediatrics, decentralised care, rural health, health equity, Aboriginal health, care coordination, telehealth, multidisciplinary care, Western Pacific