Expressions of Interest Sought: Rare Awareness, Education, Support and Training Stakeholder Reference Group

  • Do you have lived experience of rare disease?
  • Are you actively connected with a rare disease community?
  • Would you like to contribute to an innovative rare disease awareness, education, support and training program designed to improve outcomes for all Australians living with a rare disease?

We are looking for people to join the Rare Awareness, Education, Support and Training (RArEST) Stakeholder Reference Group. The RArEST project is being led by the University of New South Wales (UNSW) in collaboration with Rare Voices Australia (RVA) and the University of Western Australia and Macquarie University.

Role description

The RArEST project is a federal government funded initiative that aims to increase awareness, education, support and training for rare diseases among health professionals and within the rare disease community. The RArEST project will progress implementation of the National Strategic Action Plan for Rare Diseases (the Action Plan). Read more about the RArEST project here.

We are inviting people to lodge an expression of interest (EOI) to join the Stakeholder Reference Group, which will help us to design what the project will deliver (e.g. guiding what rare disease awareness, education, training and support resources are developed and how they are delivered).

By bringing together this group, we hope to increase the relevance and impact of the RArEST project. Members will be supported to take part in the group and will be offered reimbursement for their time and expertise. It will be a prerequisite to complete introductory training.

We wish to hear from people who:

  • Have lived experience — personal experience of living with a rare disease or caring for someone with a rare disease.
  • Are able to influence and communicate across a broad network of individuals or organisations in the rare disease sector.
  • Can demonstrate their commitment to ensuring their input into consultative processes is representative of their community/ies and reflects community engagement.
  • Preference will be given to those who represent one of the priority populations identified in the Action Plan, which include people living with a rare disease, Aboriginal and Torres Strait Islander people, people experiencing socioeconomic hardship, people from culturally and linguistically diverse (CALD) backgrounds, people living in regional, rural or remote communities and people who are suspected of having an undiagnosed rare disease.

Those who feel they can contribute effectively are encouraged to submit an EOI to participate in the Stakeholder Reference Group, which will see them consulting and collaborating with the RArEST team. This team will include RVA representatives, rare disease clinicians and researchers and other members of the rare disease community. Selection will be based on building a diverse Stakeholder Reference Group with broadest possible representation from the rare disease community. Experience as a consumer representative is not necessary as training and support will be provided.

Participants will be asked to:

  • Share their own experiences and the experiences of the broader community they represent.
  • Provide feedback on the relevance, understanding and value of proposed projects.
  • Participate in discussions.
  • Take a person-centered approach to healthcare.
  • Act as a conduit between the RArEST project and consumers and/or community organisations to provide feedback from the Stakeholder Reference Group and seek input and advice to pass back to the group.
  • Prepare for meetings and read materials ahead of meetings.

Members of the Stakeholder Reference Group who are consumers living with a rare disease will receive an honorarium payment of $45.26 per hour for their time preparing for and attending meetings and undertaking pre-agreed training.

Translation and support services may be available. Requests are welcomed.

We are looking for people who have the capacity to dedicate approximately 40-60 hours to this project over the next 2.5 years. 

How to lodge an EOI

Please complete the online EOI form below by COB Tuesday 25 January. Questions regarding the Stakeholder Reference Group can be directed to

RArEST Stakeholder Reference Group EOI Form

Please check any of the priority populations you identify with:(Required)

We are person-centred

We want the outcomes that are best for each person as an individual. We will be driven by the needs of each person and by what works best for them. We won’t impose our assumptions on people.

We will actively build and maintain partnerships

We are the voice of the sector, magnifying the voices of all stakeholders that share our goals. We recognise that achieving the transformation we want to see in Australia will require us working in partnership with stakeholders.

We aim for a unified voice

We recognise that without a unified voice, the rare disease sector cannot be successful in achieving the support for people living with a rare disease that we need. As a result, we will prioritise consultation and conversation within the sector to ensure that our voice to policymakers and the broader community is as unified as possible.

We work for equity of access and participation

We believe that equity of access and participation is vital for all people living with a rare disease in Australia. In our initiatives, we will ensure that equity is a key factor in our planning and design. And in our advocacy, the principles of equity will be foremost in our messaging.

We will equip and empower

We aim to equip and empower organisations and people to help them advocate and work for themselves.

We are solutions and results oriented

We want to see results for people living with a rare disease in Australia. We are not going to be bound to theoretical models. We will adopt what works and will test our initiatives against the results they deliver.

We are credible

We recognise that our effectiveness is only as good as our credibility and trustworthiness. We will ensure that all of our actions and words build our credibility, rather than erode it. We recognise that trust takes a long time to build but can be quickly lost.

We will adopt a systemic focus

We are uniquely positioned to engage in systemic advocacy. Effective reform to systems and processes must be prioritised to reduce individuals and groups repeatedly facing common challenges. This is vital to achieving sustainable change at scale.

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