Categories

News

RVA News

  • Published On: 8 December 2021

    Introducing RVA’s New Online Education Portal

    Since the launch of the National Strategic Action Plan for Rare Diseases (the Action Plan) in February 2020, Rare Voices Australia’s (RVA) Mentorship and Education Program...

  • Published On: 30 November 2021

    RVA is Hiring: Resources and Information Officer

    Rare Voices Australia (RVA) is looking for a Resources and Information Officer to join our passionate and dedicated team! RVA is Australia’s national non profit peak body...

  • Published On: 30 November 2021

    Parliamentary Inquiry Position Statement: ‘The New Frontier – Delivering Better Health for All Australians’

    On 25 November 2021, the Standing Committee on Health, Aged Care and Sport (the Standing Committee) tabled...

  • Published On: 24 November 2021

    Recap: 2021 Virtual National Rare Disease Summit

    Thank you to those who attended Rare Voices Australia’s (RVA) 2021 Virtual National Rare Disease Summit (the Virtual Summit) on 12 November. The Virtual Summit brought...

  • Published On: 15 November 2021

    Systemic National Disability Insurance Scheme Advocacy – Expressions of Interest Sought

    Rare Voices Australia (RVA) has been engaging in ongoing systemic advocacy to seek pathways to ensure that the National Disability Insurance Scheme...

  • Published On: 29 September 2021

    Rare Metabolic Disease Workforce Study – September 2021 Activity Update

    ‘Sustainable systems and workforce’ is one of three foundation principles of the National Strategic Action Plan for Rare Diseases (the Action Plan)...

  • Published On: 27 August 2021

    Rare Voices Australia Research Update: April – July 2021

    Rare Voices Australia (RVA) has continued investing heavily in rare disease research in 2021 to gather evidence for policy reform that leads to better outcomes for Australians living with a rare disease...

  • Published On: 18 August 2021

    Patient or Carer Experience Survey: Strengthening the Rare Disease Healthcare Workforce in Australia

    Rare Voices Australia (RVA) has engaged Equity Economics and Development Partners to undertake a rare metabolic disease workforce study...

  • Published On: 28 July 2021

    Rare Voices Australia Education and Mentoring Update: May – July 2021

    Rare Voices Australia’s (RVA) Education Program and mentoring support is tailored towards the needs of individual RVA Partner organisations and their unique strategic goals and aims...

  • Published On: 30 June 2021

    RVA Partner Education Webinar Series – Rare Disease Research in Australia

    Rare Voices Australia (RVA) is hosting an education webinar series for RVA Partner organisations that focus on research...

  • Published On: 30 June 2021

    RVA is Hiring: Project Officer – Western Australia

    The Australian Rare Disease Research Network (ARDRN) held its first virtual meeting on 18 September 2025, witRVA is looking for a Project Officer in Western Australia...

  • Published On: 29 June 2021

    Sneak Peek: Rare Awareness Rare Education (R.A.R.E) Portal for Rare Diseases Logo

    Rare Voices Australia (RVA) is excited to officially launch the logo for the Rare Awareness Rare Education (R.A.R.E) Portal for rare diseases...