Categories

News

RVA News

  • Published On: 27 August 2025

    Human Genetics Society of Australasia 48th Annual Scientific Meeting: Rare Voices Australia Recap

    Between 14–18 August 2025, Rare Voices Australia (RVA) attended the 48th Annual Scientific Meeting of the Human Genetics Society of Australasia...

  • Published On: 29 July 2025

    Published: Australia’s Top 10 Rare Disease Research Priorities

    The Kids Research Institute Australia (formerly the Telethon Kids Institute) and Rare Voices Australia (RVA) have published Australia’s Top 10 Rare Disease Research Priorities...

  • Published On: 29 July 2025

    Invitation: Join the New Australian Rare Disease Research Network and Australia’s Top 10 Rare Disease Research Priorities Launch

    Rare Voices Australia (RVA) is facilitating the first meeting for the new Australian Rare Disease Research Network (ARDRN) on 18 September 2025...

  • Published On: 28 July 2025

    Communique: Long-Term Strategic Guidance of Australia’s Digital Health and Health Data Infrastructure

    On 5 June 2025, RVA attended a workshop co-hosted by Research Australia and Digital Health CRC. The workshop brought together key stakeholders...

  • Published On: 27 June 2025

    Progressing Implementation of the National Strategy for Australia’s Rare Metabolic Disease Workforce: Exciting Developments for Metabolic Medicine

    The Royal Australasian College of Physicians (RACP), together with the Human Genetics Society of Australasia (HGSA)...

  • Published On: 5 May 2025

    Rare Disease Disability Project: Virtual Kitchen Table Peer Support Sessions Commencing in May

    As part of the Rare Disease Disability Project (the Project), Rare Voices Australia (RVA) is facilitating virtual kitchen table peer support sessions. Two sessions will be held...

  • Published On: 23 April 2025

    Released: National Statement on Ethical Conduct in Human Research 2025

    The revised National Statement on Ethical Conduct in Human Research 2025 (National Statement) was published on 6 March 2025...

  • Published On: 27 March 2025

    National Public Consultations on the Draft Quality Standards and Accreditation Scheme for Human Research Ethics Committees

    Imagine a future where Australia is a leading destination for health and medical research. Have your say on improving ethics review processes...

  • Published On: 27 March 2025

    Expressions of Interest: Rare Disease Disability Project Stakeholder Reference Group

    As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is leading the Rare Disease Disability Project (the Project)...

  • Published On: 11 March 2025

    Web Page: Health Technology Assessment Review Implementation Advisory Group

    The Health Technology Assessment Review Implementation Advisory Group (the IAG) has a dedicated web page on the Department of Health and Aged Care’s website...

  • Published On: 20 February 2025

    2025 Rare Disease Day Media Pack and Landmark Illuminations

    Rare Disease Day is marked on the last day of February annually. In 2025, Rare Disease Day falls on 28 February. Rare Disease Day is the globally coordinated movement for rare diseases...

  • Published On: 20 February 2025

    Highlights: 2025 Rare Disease Day Parliamentary Event

    Thank you to those who attended Rare Voices Australia’s (RVA) Rare Disease Day Parliamentary Event hosted by the Parliamentary Friends of Australians Living with Rare Diseases on 11 February 2025...