The World Health Organisation (WHO) has identified rare diseases as a significant global public health priority. With over 300 million people affected globally, 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 worldwide. These conditions pose unique challenges for patients and their families, who often face fragmented care, complex healthcare systems, and a lack of tailored resources. In Western Australia, the burden of rare diseases is particularly pronounced, with many individuals struggling to access coordinated, holistic support. Recognising this, Anthologie, in partnership with WA Health and the Rare Care Centre, has embarked on a mission to transform the healthcare experience for rare disease families through the development of the Rare Portal.

IMPLEMENTATION & IMPACT

Anthologie, collaborating with WA Health and the Rare Care Centre, aims to address the challenges faced by rare disease families through the creation of the Rare Portal. This innovative digital platform reimagines the healthcare experience for families living with rare conditions, focusing on key pain points and facilitating a more seamless, supportive journey.

The Rare Portal is designed for patients and families navigating a complex healthcare system, encompassing various sectors such as health, mental health, education, disability, and social services. It provides accessible information, straightforward consent touchpoints, and seamless data exchange between sectors. By integrating multiple care sectors, the portal offers a comprehensive support system, simplifies consent processes, and facilitates efficient data sharing. This empowers parents to focus on their roles while enabling experts to serve as advocates and partners, alleviating the stress of managing rare diseases.

A BRIGHT FUTURE

Currently, the Rare Portal project is in the pre-funding stage, with efforts underway to secure funding for launching a Minimum Viable Product (MVP) by Q4 2024. The product roadmap, developed with the Rare Care team, outlines the steps needed to bring the portal to life. Post-launch, Anthologie plans to work closely with parents and clinicians to test and refine the portal based on real-time feedback, ensuring it meets the evolving needs of rare disease families.

The development of the Rare Portal represents a significant step towards transforming the healthcare experience for rare disease families in Western Australia. By addressing the unique challenges they face and providing a more coordinated, supportive system, the portal has the potential to significantly improve the quality of life for these families. As global health organisations continue to prioritise rare diseases, initiatives like the Rare Portal are crucial in advancing care and support for affected individuals worldwide.

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