Rare Voices Australia (RVA) is the national peak body for the estimated two million Australians living with a rare disease. RVA provides a strong, unified voice to advocate for policy as well as health, disability and other systems that work for Australians living with a rare disease. The organisation’s person-centred focus sees RVA working with key stakeholders in the rare disease sector, including people living with a rare disease, governments, key peak bodies, researchers, clinicians and industry.
Rare Voices Australia’s Vision
RVA is dedicated to working with all key stakeholders to drive the best outcomes for Australians living with a rare disease.
Rare Voices Australia’s Mission
RVA provides collaborative leadership for the development and implementation of rare disease policy in Australia.
Governance
RVA is governed by an independent Board of Directors and a comprehensive Constitution. Several board members have a personal connection with a rare disease and members are based around Australia. All directors and the Chair are required by legislation to hold a director identification number (DIN) available through the Australian Business Registry Services.
RVA’s Board of Directors preside over an Annual General Meeting in the last quarter annually. In accordance with the Australian Securities and Investment Commission (ASIC) and in compliance with a registered Company Limited by Guarantee (ABN 69 156 254 303), RVA’s financials are audited by a registered Company Auditor. Annual Reports are submitted and publicly disclosed with ASIC and the Australian Charities and Not-for-Profits Commission (ACNC). RVA is a registered charity, endorsed with Deductible Gift Recipient (DGR) status.
Rare Voices Australia’s Work
RVA’s work is informed by the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan), which was launched by the Minister for Health in 2020 with bipartisan support. The Action Plan is the first nationally coordinated effort to address rare disease in Australia and includes three interrelated pillars:
- Awareness and Education
- Care and Support
- Research and Data
In 2018, the Australian Government commissioned RVA to lead the collaborative development of the Action Plan as the national peak body for Australians living with a rare disease. RVA is now leading the Action Plan’s collaborative implementation.
Scientific and Medical Advisory Committee
RVA’s Scientific and Medical Advisory Committee provides the organisation with medical and clinical perspectives, guidelines and information as needed.
Rare Voices Australia Is Seeking Applications for Non-Executive Board Directors
RVA’s Board of Directors is seeking to appoint up to three Directors. Alongside existing Directors, the appointees will contribute to RVA’s vision to advocate for the best outcomes for Australians living with a rare disease.
Please note: this is a voluntary position.
Applications
Applicants are required to provide a CV and brief response (no more than one page) to the criteria outlined in the Position Description. Please be sure to read the full Position Description before applying. Applications close at 5pm AEST on 31 May 2024.
