As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is dedicated to working with key stakeholders to drive the best outcomes for Australians living with a rare disease. Key rare disease stakeholders include people living with a rare disease, governments, key peak bodies, researchers, clinicians and industry.
Rare Voices Australia and Project Partnerships
RVA supports the need for high-quality, person-centred project partnerships that are collaborative and positively impact Australians living with a rare disease. RVA welcomes genuine project partnerships that broadly align with one or more of the priorities in 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 disease in Australia and is the Australian Government’s response to rare diseases.
RVA led the collaborative development of the Action Plan in 2018 and 2019 through an extensive nation-wide multistakeholder consultation process. RVA is now working in partnership with stakeholders to support the collaborative implementation of the Action Plan, recognising that implementation is the shared responsibility of the entire rare disease sector.
Rare Voices Australia Project Partnership Priorities
RVA partners on projects that:
- Relate to, or are transferable to, a range of rare diseases and are person-centred.
- Respond to unmet need in rare disease and/or address existing gaps.
- Are collaborative and lead to better outcomes for Australians living with a rare disease.
Rare Voices Australia’s Areas of Expertise
RVA provides collaborative leadership for the development and implementation of rare disease policy in Australia. While we can provide limited in-kind support, budgeted support enables partners to fully leverage RVA’s expertise and contributions.
Our project roles and experience include:
- Formal participation in project (e.g. advisory groups, steering committees, targeted interviews).
- Rare disease consumer and policy advice and review.
- Facilitating the involvement of relevant rare disease groups/organisations and their members.
What We Can Bring to Your Project
- A person-centred approach to project co-design and implementation.
- A conduit to rare disease groups/organisations relevant to your project.
- Assistance with facilitating meaningful consumer engagement.
- Access to a wealth of experience in rare disease advocacy and policy influence.
- Support for leveraging external grant funding for rare disease projects/initiatives.
- The opportunity to work with the national peak body for Australians living with a rare disease on a specific project.
Contacting Rare Voices Australia with Your Project Partnership Proposal
Please read RVA’s Guidelines for Project Partnerships for more information, including how to contact RVA with your Project Partnership Proposal.
