Who we are
Rare Voices Australia (RVA) is Australia's national non-profit peak body, representing people who live with a rare disease. RVA is dedicated to working with all stakeholders to drive the best outcomes for Australians living with a rare disease.
- We provide a strong unified voice to advocate for rare disease policy reform, as this is essential to improving the lives of the estimated two million Australians living with a rare disease.
- We progress the collaborative implementation of the National Strategic Action Plan for Rare Diseases (the Action Plan). RVA led the collaborative development of the Action Plan, which was launched in February 2020 by the Australian Government with strong bipartisan support. Developed ‘by the rare disease sector, for the rare disease sector,’ the Action Plan is the first nationally coordinated effort to address rare diseases in Australia.
- We provide leadership and advocacy, raise awareness of issues and influence policy by engaging with all stakeholders in the rare disease sector and facilitating collaboration.
- Our collaborative approach to working with our RVA Partners and stakeholders ensures our actions are well-considered and well-targeted, sustainable, and geared towards achieving a high collective impact.
- Our national team is small, collaborative and strategic. We are innovative thinkers who are nimble and proactive. We are comfortable working remotely as our team members are located across Australia. We all pitch in when needed, and act with the highest level of integrity and respect for our RVA Partners and stakeholders. We thrive on achieving progress on the big issues for people living with a rare disease.
The Research and Evaluation Officer will play a key role in facilitating the collaborative implementation of the Action Plan, including leading the development of an online digital repository. This role will source and conduct high-quality evidence-based research and program evaluation to support RVA’s advocacy, policy development and education activities. This role will also cultivate research partnerships with external organisations. This position would be well suited to an individual who is skilled in strategic research and evaluation, has strong communication skills and who enjoys working collaboratively as part of a team.
A position description is attached.