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RVA News

  • 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...

  • Published On: 9 February 2023

    2023 Rare Disease Day Media Pack

    Rare Disease Day occurs on the last day of February annually. In 2023, Rare Disease Day will be marked on Tuesday 28 February. Rare Voices Australia (RVA) will be organising...

  • Published On: 31 January 2023

    2023 Sawatzky Cup Raises Over $11,000 for Rare Voices Australia and Australians Living With a Rare Disease

    On behalf of Rare Voices Australia (RVA) and the estimated two million Australians living with a rare disease, thank you to everyone...