Invitation: Understanding Impact Across the Rare Disease Sector

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) remains committed to monitoring the collaborative implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan). The Action Plan is the first nationally coordinated effort to address rare diseases in Australia.

As part of this ongoing work, RVA is seeking expressions of interest from a range of rare disease stakeholders willing to take part in an online interview to share stories of change on behalf of their community, group/organisation, practice or institution.

More information about the online interview process

Participants will be asked to share a story or stories that, in their experience, highlight the most significant change in rare disease since the launch of the Action Plan in 2020. Stories may reflect large, small, negative or positive changes.

Why your participation and input are important

These interviews are a key step in a qualitative monitoring and evaluation technique known as the Most Significant Change methodology. RVA has identified this methodology as a suitable tool for assessing the collaborative implementation of the Action Plan and understanding the broader impact of activities, outputs and outcomes across the rare disease sector.

Online interviews will take no longer than 30 minutes and are planned for May and June 2024. If you have any questions, or to learn more about the Most Significant Change methodology, please contact RVA’s Research and Evaluation Manager at [email protected].

How your contribution will help with understanding impact across the rare disease sector

With your consent, the stories and information collected from these interviews will be used to:

  • Understand the impact of activities, outputs and outcomes
  • Identify gaps or persistent problems
  • Inform a public report that will share broad areas of most significant change and highlight gaps that require prioritisation. RVA will use this report in our ongoing advocacy to drive the best outcomes for the estimated two million Australians living with a rare disease

To express your interest in participating, please fill out the form below.

Lodge Your Expression of Interest

Stakeholder group (please select all that apply):(Required)