The World Health Organisation (WHO) has identified rare diseases as a significant global public health priority. With over 300 million people affected globally – 70% of whom are children – the need for comprehensive, coordinated care is more urgent than ever. Health organisations and advocacy groups worldwide emphasise the importance of addressing childhood rare diseases to improve health outcomes and quality of life for affected families.
Rare diseases, although individually uncommon, collectively affect millions of people. These conditions pose unique challenges for patients and their families, who often face fragmented care, a lack of cross-sector coordination, and the emotional toll of retelling their story to multiple professionals across disconnected systems. In Western Australia alone, over 63,000 children are affected, making this a pressing local priority.
Recognising this, Anthologie – working in close partnership with WA Health and the Rare Care Centre—embarked on a mission to co-create the Rare Portal, a digital platform designed to transform how families experience the healthcare system.
Through a deeply collaborative process involving parents, clinicians, researchers and young people, we led:
The Rare Portal is designed to support patients and families navigating the full spectrum of care—across health, mental health, education, disability, and social services. The platform offers:
A single source of truth: a centralised place to store, save and share information
Consent made simple: empowering families to control who accesses their story, and when
Cross-sector collaboration: enabling professionals to work from the same shared information
Stress reduction: minimising repetition, delays and the emotional weight of fractured systems
By integrating these features, the Rare Portal allows parents to focus on being caregivers – not coordinators – while enabling experts to become stronger advocates and partners in care.
With the core prototype now validated, the next phase includes securing $2M in funding to deliver and test the MVP in clinical environments. Once launched, the portal will undergo real-world testing and refinement, continuing to involve families and clinicians as co-creators to ensure the platform evolves in line with the community’s needs.
The Rare Portal represents a critical shift toward equity, empathy and connection in rare disease care. By streamlining access, reducing trauma, and supporting true cross-sector collaboration, it has the potential to become a model for other jurisdictions – both nationally and globally.
As rare disease rises on the global agenda, platforms like the Rare Portal are not just important – they’re essential.
