As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) works with all key stakeholders in the rare disease sector to drive the best outcomes for Australians living with a rare disease. Key stakeholders include people living with a rare disease, governments, advocates, researchers, clinicians, and industry.

RVA works collaboratively to lead the development and implementation of rare disease policy in Australia. This involves liaising with all governments in Australia to influence policy and improve the systems that impact people living with a rare disease. Learn more about RVA’s advocacy.

RVA Partners are:

• Rare disease groups/organisations.
• Individuals living with a rare disease (including family and caregivers).
• Individual researchers, clinicians and other care professionals.

RVA acknowledges the diversity in the rare disease sector regarding the formalisation of groups/organisations. We formally partner with rare disease groups/organisations that meet the following criteria:

• Can demonstrate a representative perspective for a rare disease/s community.
• Are a consumer-led, not-for-profit group/organisation with no commercial incentive.
• Can pay the RVA Partner fee from group/organisational funds.*

All conflicts of interest should be declared when lodging your application to become an RVA Partner.

*Note: If a rare disease group/organisation does not yet have the capacity to pay the RVA Partner fee from group/organisational funds, an individual partnership is most appropriate, while the group/organisation is being established.

• Rare disease policy support.
• Advocacy guidance and strategy.
• Access to RVA’s Education Program, including our online education site.
• An invitation to the biennial National Rare Disease Summit.
• An invitation to RVA Parliamentary Events.
• The opportunity to network in RVA’s closed Facebook group for RVA Partner group/organisation leaders.
• A dedicated rare disease speaker from RVA for events where possible.
• Eligibility to apply for travel support for RVA events.
• The opportunity to contribute to the broader rare disease sector in Australia.
• RVA social media and e-newsletter promotion.*
• News and updates relevant to RVA Partner groups/organisations.
• A subscription to RVA’s monthly e-newsletter.

*Note: RVA will only share content from groups/organisations that comply with all relevant Australian legislation and regulations.

RVA formally partners with individuals who meet the following criteria:

• Individuals living with a rare disease for which:
  • There is no support group/organisation, or
  • They are not a member of an existing support group/organisation, or
  • The support group/organisation is not an RVA Partner organisation.
• Individuals who are researchers, clinicians and other care professionals.

RVA recognises people in the rare disease sector wear multiple ‘hats’. All conflicts of interest should be declared when lodging your application to become an RVA Partner.

• Rare disease policy support.
• Advocacy guidance and strategy.
• Access to RVA’s Education Program, including our online education site.
• An invitation to RVA education-based events.
• Remain updated on issues regarding the broader rare disease sector in Australia.
• A subscription to RVA’s monthly e-newsletter.

• The opportunity to contribute to the broader rare disease sector in Australia.
• Access to RVA’s Education Program, including our online education site.
• An invitation to the biennial National Rare Disease Summit.
• An invitation to RVA Parliamentary Events.
• An understanding of issues important to the rare disease community and sector.
• Access to a wealth of experience in rare disease advocacy and policy influence.
• A subscription to RVA’s monthly e-newsletter.

All money collected from RVA Partners contributes to activity for the broader rare disease sector. For example, advocating for the full implementation of the Action Plan to address gaps and inequities in rare disease awareness and education, care and support, and research and data.

• RVA’s Research Partnerships Program
• The Australian Rare Disease Research Network
• Project Partnerships
• The Round Table of Companies for industry

See the Get Involved page for other ways you can help to support the estimated two million Australians living with a rare disease.