As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is dedicated to working with all key stakeholders to drive the best outcomes for Australians living with a rare disease. RVA provides collaborative leadership for the development and implementation of rare disease policy in Australia. Learn more about how RVA works with key stakeholders, which include people living with a rare disease, governments, key peak bodies, researchers, clinicians and industry.
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 National Strategic Action Plan for Rare Diseases (the Action Plan).
The Action Plan was informed by an extensive multi-stakeholder consultation process and is the Australian Government’s response to rare diseases.
RVA 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
What can RVA bring to your project?
- A person-centred approach to project co-design and implementation
- A conduit to rare disease organisations relevant to your project
- Assistance 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