Update: Engagement with Three Consumer-Led Rare and Complex Disease Organisations – The Navigator Project

RVA News

Rare Voices Australia (RVA) is pleased to partner with Tuberous Sclerosis Australia (TSA), Mito Foundation and Crohn’s & Colitis Australia to implement the third component of The Navigator Project:

Engagement with three consumer-led rare and complex disease organisations

RVA congratulates the successful organisations and we look forward to working with you! We thank every organisation that lodged an expression of interest (EOI) and participated in the process.

The successful organisations will receive $20,000 (+GST) per grant year for three years, totalling a maximum amount of $60,000 (+GST) to establish the benefits of an existing patient navigation model and contribute to The Navigator Project’s overall data collection and reporting. This will involve information sharing to support continuous improvement of telehealth nurse-led services for people/families living with a rare and complex disease, while also providing an evidence base for alternative patient navigation models for rare and complex diseases.

Background Information

In 2023, RVA sought EOIs from experienced consumer-led rare and complex disease organisations already providing disease-specific telehealth service navigation to progress the third component of The Navigator Project. Selection was based on an open competitive process.

What Is the Navigator Project?

The Navigator Project is being led by RVA—the national peak body for Australians living with a rare disease—and is funded by the Department of Health and Aged Care’s Rare and Complex Disease Telehealth Nurse Program grant. Its purpose is to support the estimated two million Australians living with a rare disease to navigate the health system, including via the assistance of telehealth nurses.

The Navigator Project is well underway. Read more about The Navigator Project’s three core components and how this work accelerates implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases via this article on RVA’s website.

Collaboration, sustainability, data collection and evaluation are key aspects of The Navigator Project. RVA will continue updating the sector regarding The Navigator Project as the initiative continues progressing.

Queries About The Navigator Project

Please direct all queries about The Navigator Project to: [email protected].