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RVA News

  • Published On: 26 April 2023

    Health Technology Assessment Policy and Methods Review: Rare Disease Sector Webinar

    Equitable access to health technology is a key priority of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan)...

  • Published On: 12 April 2023

    Public Consultation 1 Commences: Health Technology Assessment (HTA) Policy and Methods Review

    The Department of Health and Aged Care has advised that the first round of public consultation for the Health Technology Assessment (HTA)...

  • Published On: 29 March 2023

    Published: Principles for consumer involvement in research funded by the Medical Research Future Fund (MRFF) – March 2023

    In March, the Australian Government Department of Health and Aged Care published Principles for consumer involvement...

  • Published On: 29 March 2023

    Launched: ‘National Strategy for Australia’s Rare Metabolic Disease Workforce’

    One year on from the launch of the Rare Metabolic Disease Workforce White Paper: Towards a Strengthened Rare Disease Workforce for Australia...

  • Published On: 29 March 2023

    Launched: Rare Awareness Rare Education (RARE) Portal

    As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is leading the collaborative development of the Rare Awareness Rare Education (RARE) Portal...

  • Published On: 27 March 2023

    Rare Voices Australia Is Hiring: Communications and Engagement Officer

    Rare Voices Australia (RVA) is looking to recruit a Communications and Engagement Officer...

  • Published On: 22 March 2023

    Terms of Reference Published: Health Technology Assessment Policy and Methods Review

    The Australian Government Department of Health and Aged Care has published the terms of reference...

  • Published On: 21 March 2023

    Recap: 2023 Rare Disease Day

    Thank you to everyone for your support of 2023 Rare Disease Day (28 February) and the estimated two million Australians living with a rare disease...

  • Published On: 9 March 2023

    Rare Voices Australia 2023 Rare Disease Day Parliamentary Event

    Rare Voices Australia (RVA) thanks everyone who attended our Rare Disease Day Parliamentary Event in Canberra on 8 March 2023 hosted by Dr Mike Freelander...

  • Published On: 27 February 2023

    National Disability Insurance Scheme (NDIS) Advocacy Update: February 2023

    Rare disease appropriate National Disability Insurance Scheme (NDIS) supports and planning are an ongoing focus of Rare Voices Australia’s (RVA) advocacy...

  • Published On: 23 February 2023

    2023 Rare Disease Day Parliamentary Event: Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia

    Rare Voices Australia (RVA) was pleased to attend a Rare Disease Day Parliamentary Event on 21 February hosted...

  • Published On: 23 February 2023

    National Disability Insurance Scheme (NDIS) Advocacy Update: February 2023

    Rare disease appropriate National Disability Insurance Scheme (NDIS) supports and planning are an ongoing focus...