RArEST Project

Australia’s first-ever National Recommendations for Rare Disease Health Care (the Recommendations) are now available!

The Recommendations were developed as part of RArEST Project Stream 2, and outline how Australian health professionals can provide high quality care to people living with a rare disease, their families, and other carers.

Co-designed by an extensive multi-stakeholder consultation process, the Recommendations were developed in collaboration with health professionals, academics, and people living with a rare disease.

The Recommendations have been endorsed by Rare Voices Australia (RVA) and 10 national colleges and bodies. They have also been officially recognised as an Accepted Clinical Resource by The Royal Australian College of General Practitioners.

Mental Health and Wellbeing Resources

Support for People Living with a Rare Disease

Several fact sheets have been developed to share information about digital mental health, and to present credible digital mental health services to support the rare disease community. These fact sheets has been developed through members of the SRG, with input from rare disease organisation leaders and mental health clinicians who are involved in digital mental health support.

Download the Digital Mental Health Fact Sheet [PDF]

Download the Digital Mental Health Fact Sheet – Easy English [PDF]

Download the Digital Mental Health Fact Sheet – Plain Language [Word]

Support for Health Professionals

Three case studies have been developed to highlight the challenges to mental health and wellbeing people living with a rare disease may experience at any time. In addition to three case study videos, this web page on the Rare Awareness Rare Education (RARE) Portal includes information about reliable resources, information and support pathways for health professionals working with people living with a rare disease.

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 has adapted 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.

Rare Disease Case Based Learning for General Practitioners 

CPD-accredited case-based learning on rare diseases, developed specifically for general practitioners (GPs) by the RArEST Project team, is available on the Royal Australian College of General Practitioners (RACGP) website. check is a CPD learning activity written by expert clinicians and reviewed by subject matter experts (see the image for a look at the cover of the rare diseases check). It can be accessed via the RACGP gplearning 2023 page on the RACGP website. RACGP members should use the ‘Search’ function to enrol in the ‘Check: 2023 catalogue’ course. 

Unit 607 was developed by members of the RArEST Project team and our Health Professional Education and Training Working Group, and includes four case-based scenarios that GPs may encounter in routine clinical practice. Each case includes background, clinical questions, further information, and answers. The activity is accredited for 8 hours of CPD.

‘Taking Action Together Toolkit: Improving Health and Wellbeing Outcomes for Australians Living with a Rare Disease’

The Taking Action Together Toolkit: Improving Health and Wellbeing Outcomes for Australians Living with a Rare Disease (the Toolkit) was developed to show how the Australian rare disease sector has worked effectively together to advocate (speak up) for systemic change for people living with a rare disease. The Toolkit begins with case studies describing how Australian organisations brought about systemic change. It then describes four key approaches used by these organisations that may help with effective systemic advocacy, including tools that may be useful to practically apply these approaches. Read the Toolkit.

Want to Know More About the Rare Disease Sector and How to Collaborate with Other Stakeholders?

As part of Stream 3 of the RArEST Project, four one-page fact sheets have been produced to highlight:

• Some of the challenges impacting people living with a rare disease
• Opportunities to collaborate
• The importance of lived experience in the co-design of health care services accessed by people living with a rare disease

These fact sheets may be read as a suite of resources, or as standalone resources. If you would like to know more about the information presented in the fact sheets, please watch this space! A multi-stakeholder engagement toolkit for the rare disease sector is being developed, and will explore this information in more detail, linking stakeholders to additional resources.

Download the fact sheets

What does it mean to live with a rare disease? [PDF]

Co-design and the person-centred approach [PDF]

The importance of collaboration [PDF]

A shared purpose – hearing from the rare disease community [PDF]

For more information about the one-pagers, please contact [email protected]

The Australian Rare Disease Organisations Community of Practice

Purpose

The Australian Rare Disease Organisations Community of Practice (ARDOCoP) was established as a direct result of consultations with Australian rare disease organisations as part of the RArEST Project.

The ARDOCoP is focused on advancing systemic advocacy for rare diseases to influence systems (health, disability, social care, research and others) to better respond to the rare disease community. The ARDOCoP operates using a co-design process, whereby various rare disease organisation representatives create a sustainable social learning model to share, collaborate and build on advocacy work already being undertaken, currently happening, or being planned for the future, in the rare disease sector.

The ARDOCoP is predominantly (but not exclusively) a virtual space for mutual learning and knowledge exchange, collaboration, and expertise-sharing among rare disease organisations undertaking advocacy to improve the experience of people living with a rare disease, including people with undiagnosed rare diseases.

The ARDOCoP functions under a distributed leadership model with all members contributing according to their capacity. The ARDOCoP aims to provide the following:

• Transparent and open communication among members through discussion groups, blog posts, and Q&A forums
• A consolidated repository of resources, including advocacy case studies, templates, strategies, submissions and processes, as shared by members
• The opportunity to hold educational sessions virtually or face-to-face (recorded where possible) with a varied format, e.g., guest speakers, case discussions, problem-solving sessions, or knowledge exchange sessions on particular topics, as agreed by members
• Face-to-face sessions and opportunities to meet in-person where possible that are leveraged on occasions when the rare disease community meets, e.g., RVA’s Rare Disease Day Parliamentary Event in February/March or in alignment with other meetings or conferences
• Enabling ‘sharing the load’ of rare disease systemic advocacy so that not every organisation has to respond to every government consultation or policy when a combined effort may be possible

Download a summary (PDF) of the ARDOCoP sessions facilitated throughout the RArEST Project.

Want to Find Out More?

For more information about the ARDOCoP, please contact Christina Rojas: [email protected]

RArEST Project Background

The Rare Disease Awareness, Education, Support and Training (RArEST) Project was a collaboration between Rare Voices Australia (RVA), 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 developed and delivered rare disease awareness resources, education, support and training.

The RArEST Project comprised 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 was guided by a Stakeholder Reference Group (SRG), which was appointed in 2022 and consisted 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 was a key initiative in progressing implementation of the Action Plan as it addressed 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.

RArEST Project Learnings

To provide stakeholders with an easy to follow snapshot of RArEST Project learnings and deliverables, a suite of one pagers were developed.

Overall RArEST Project learnings (PDF)

Stream 1 learnings and deliverables (PDF)

Stream 2 learnings and deliverables (PDF)

Stream 3 learnings and deliverables (PDF)

More Information About the RArEST Project

Please email the RArEST Project team with any queries you may have: [email protected]