Become an RVA Partner

Rare Voices Australia (RVA) is the national peak body for the estimated two million Australians living with a rare disease, formally collaborating with and helping to strengthen our 100+ RVA Partner organisations.

RVA formally partners with the following cohorts:

  • Rare disease support groups/organisations
  • Individuals living with a rare disease (includes family and carers), researchers, clinicians and other care professionals

RVA Partner Criteria

Rare disease support groups/organisations

RVA formally partners with rare disease support groups/organisations that meet the following criteria. They:

  • Can demonstrate a representative perspective for a rare disease/s community
  • Must be a consumer-led, not-for-profit group/organisation with no commercial incentive 

Individuals

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 that people in the rare disease sector wear many different ‘hats’. Please note that all conflicts of interest should be declared when lodging your application to become an RVA Partner.

See the different RVA Partner levels at a glance.

Research Partnerships

RVA also welcomes genuine research partnerships with groups planning or undertaking research of all types that broadly aligns with one or more of the research priorities detailed in the National Strategic Action Plan for Rare Diseases. Click here to read more.

Industry can learn more about the RVA Round Table of Companies here.

RVA Partner Benefits

Benefits for Rare Disease Support Groups/Organisations

  • Rare disease policy support
  • Advocacy mentorship and strategy
  • Access to RVA’s Education Program
  • 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 organisation leaders
  • A dedicated rare disease speaker from RVA for events
  • Eligibility to apply for travel support for RVA events
  • RVA social media and e-newsletter promotion
  • News and updates relevant to RVA Partner organisations
  • The opportunity to contribute to the broader rare disease community in Australia
  • Subscription to RVA e-newsletter

In response to the ongoing impact of COVID-19, RVA has provided fee waivers to current RVA Partner organisations that are 100% volunteer-staffed as needed. Please contact us to discuss your organisation’s unique circumstances. 

Benefits for Individuals (People Living With a Rare Disease—Includes Family and Carers)

  • Rare disease policy support
  • Advocacy mentorship and strategy
  • Access to RVA’s Education Program
  • An invitation to the biennial National Rare Disease Summit
  • An invitation to RVA Parliamentary Events
  • The opportunity to contribute to the broader rare disease community in Australia
  • Subscription to RVA e-newsletter

Benefits for Individuals (Researchers, Clinicians and Other Care Professionals)

  • The opportunity to contribute to the broader rare disease community in Australia
  • Access to RVA’s Education Program
  • 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
  • Access to a wealth of experience in rare disease advocacy and policy influence
  • Subscription to RVA e-newsletter

RVA Partner Levels

Level 1

Suitable for: rare disease groups/organisations with one or more paid staff member ⁠— $100 (+GST) annually

Level 2

Suitable for: rare disease groups/organisations with volunteer staff only ⁠— $50 (+GST) annually

Level 3

Suitable for: individuals living with a rare disease, researchers, clinicians and other care professionals ⁠— $25 (+GST) annually

How RVA Uses RVA Partner Funds

All money collected from our RVA Partner program is used to contribute back to the rare disease sector in some way. For example, running advocacy workshops around Australia and RVA’s biennial National Rare Disease Summit.

Apply to Become an RVA Partner

Fill in the form below to apply to become an RVA Partner. For corporate or industry sponsorships or grant enquiries, please contact us or phone 0497 003 104.

Others Who Would Like to Support RVA’s Work

If you would like to support RVA’s work but do not meet the criteria for the three levels outlined above, feel free to make a tax deductible donation. You can also sign up to our monthly eNewsletter and follow RVA on social media.