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 Partners (rare disease groups/organisations). As the national peak body, RVA works with all key stakeholders in the rare disease sector (people living with a rare disease; governments; advocates; researchers; clinicians; and industry) 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. This involves liaising with all governments in Australia to influence policy and improve the services that impact people living with a rare disease.

RVA’s Work

RVA’s work is non-disease specific and is based on the commonalities of rare disease. Our advocacy focuses on rare disease policy, processes and systems. We advocate for all rare disease communities and formally partner with the following cohorts.

  • 1: Rare disease groups/organisations

We acknowledge the diversity in the rare disease sector regarding the formalisation of groups/organisations. RVA encourages all group/organisation leaders to read Engaged, Ethical and Effective: A Guide for Rare Disease Organisation Leaders in Australia (the Guide). The Guide can be used by existing organisations to maximise existing activities. It contains links to resources and checklists or self-evaluation tools for identifying current strengths and areas for development. The Guide is also a useful resource for those interested in starting an organisation.

  • 2: Individuals living with a rare disease (includes family and carers), researchers, clinicians and other care professionals

RVA Partner Criteria

Rare disease groups/organisations

RVA formally partners with rare disease 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 people in the rare disease sector wear multiple ‘hats’. Note: all conflicts of interest should be declared when lodging your application to become an RVA Partner.

RVA Partner Options

Option 1

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

Option 2

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

Option 3

Suitable for: individuals living with a rare disease (includes family and carers) ⁠— Complimentary

Option 4

Suitable for: researchers, clinicians and other care professionals —$25 (+GST) annually

RVA Partner Benefits

Benefits for Rare Disease 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 where possible
  • Eligibility to apply for travel support for RVA events
  • RVA social media and e-newsletter promotion*
  • News and updates relevant to RVA Partner groups/organisations
  • The opportunity to contribute to the broader rare disease community in Australia
  • Subscription to RVA’s monthly e-newsletter

*RVA will only promote organisations/groups that comply with all relevant Australian legislation and regulations.

Developing the Capacity of the Rare Disease Sector

Action 2.1.4 of the Australian Government’s National Strategic Action Plan for Rare Diseases is to, “Develop the capacity of rare disease organisations to represent and advocate for people living with a rare disease and their families.” As such, RVA Partner organisation fees should be paid out of organisational budget. RVA has developed a resource to assist group/organisation leaders with everything from setting up an organisation to sustainability and maximising impact in the long-term. Download the resource: Engaged, Ethical and Effective: A Guide for Rare Disease Organisation Leaders in Australia 

Apply to Become an RVA Partner (Rare Disease Groups/Organisations)

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 RVA education-based events
  • Remain updated on issues regarding the broader rare disease community in Australia
  • Subscription to RVA’s monthly 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’s monthly e-newsletter

Apply to Become an RVA Partner (Individuals)

How We Use RVA Partner Funds

All money collected from RVA Partners contributes to activity for the broader rare disease sector. For example, political advocacy, policy development, sector consultation and raising the profile of the impact of rare diseases, both in Australia and internationally.

Research Partnerships

In line with the Action Plan’s Research and Data Pillar, RVA supports the need for high quality collaborative research that is person-centred and positively impacts the lives of Australians living with a rare disease. RVA welcomes genuine partnerships with groups planning or undertaking research that addresses the core principles outlined in the Action Plan.

Project Partnerships

RVA welcomes genuine project partnerships that broadly align with one or more of the priorities in the Action Plan. 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

Round Table of Companies (Industry)

RVA’s Round Table of Companies (Round Table) is a group of pharmaceutical companies with a common interest in rare diseases and orphan drug development. RVA facilitates quarterly Round Table workshops to discuss topics relevant to the development of treatments for rare diseases.

Others Who Would Like to Support RVA’s Work

For all other enquiries, please contact us via this form or phone 0497 003 104.

If you would like to support RVA’s work but do not meet the above criteria, you can make a tax deductible donation. Alternatively, you may wish to organise a fundraiser and donate the proceeds to RVA. All stakeholders are welcome to sign up to RVA’s monthly eNewsletter and follow us on social media.