RArEST Project

The Rare Disease Awareness, Education, Support and Training (RArEST) Project is a collaboration between Rare Voices Australia, the University of New South Wales, the University of Western Australia and Macquarie University.

The RArEST Project was awarded $1.9 million in funding from the Australian Government and will develop and deliver rare disease awareness resources, education, support and training.

The RArEST Project comprises three streams:

Stream 1: Support for individuals, including mental health and wellbeing resources

Stream 2: Health professional education, support and training

Stream 3: Adopting a co-design approach to awareness and education for systemic improvement in rare disease care and support

This work is being guided by a Stakeholder Reference Group, which was appointed in 2022 and consists of people living with a rare disease representing a breadth of rare diseases and communities.

Developed by the rare disease sector, for the rare disease sector, the National Strategic Action Plan for Rare Diseases (the Action Plan) is the Australian Government’s first nationally coordinated effort to address rare diseases in Australia. The RArEST Project is a key initiative in progressing implementation of the Action Plan as it addresses several of the key priorities, actions and implementation steps identified across the Awareness and Education and Care and Support Pillars. Learn more about the Action Plan and download a suite of summary materials.

RArEST Project logo

The RArEST Project logo incorporates zebra stripes, which have become synonymous with rare diseases, while the hand represents the human element and a commitment to listening to people living with a rare disease. Red, yellow and blue are incorporated to represent the colours of the organisations that form the RArEST consortium. Additionally, green represents Aboriginal and Torres Strait Islander people and the RArEST Project’s focus on priority populations. In some Aboriginal and Torres Strait Islander people traditions, green represents land and healing, black reflects the night sky, blue symbolises waters and the day sky, red reflects the land and white represents the spirits.

Rare Disease Project ECHO®

To deliver Stream 2, the RArEST Project team is using the Project ECHO® model to create a community of clinical learning practice to increase awareness of rare diseases and provide health professionals with multidisciplinary peer learning and evidence-based, clinically informed expert support to deliver contemporary best practice health care nationally.

Project ECHO® is a free, innovative video conferencing ‘hub-and-spoke’ outreach model that connects community providers or practices (‘spokes’) to the multidisciplinary RArEST team (‘hub’). It is designed to address the needs of vulnerable populations by equipping communities and clinics with the right knowledge, at the right place, and the right time.

Learn more about Project ECHO®.

E-Learning Modules for Health Professionals: Rare Disease 101 Australia

In collaboration with Medics4RareDisease, a not-for-profit organisation based in the United Kingdom, the RArEST team are adapting a series of short, free and interactive e-learning modules for health care professionals to the Australian context. The lessons focus on person-centered approaches to common challenges for rare diseases and have been informed by extensive consultation with people living with a rare disease and Australian health care professionals. 

Follow this link for free registration and to access the available lessons as they become available over 2022 and 2023. 

If you would like to be kept up to date with occasional updates about the RArEST Project, please sign up to our mailing list by clicking this link.

Please email the RArEST Project team with any queries you may have: RArEST@unsw.edu.au