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RVA News

  • Published On: 31 March 2026

    Medical Research Future Fund (MRFF) – Missions Program Evaluation

    In December 2025, the Department of Health, Disability and Ageing (the Department) commenced public consultation on the evaluation of the Medical Research Future Fund (MRFF) Research Missions Program...

  • Published On: 31 March 2026

    World Economic Forum Report: Making Rare Diseases Count: How Better Data Can Unlock a Multitrillion-Dollar Opportunity

    In February 2026, the World Economic Forum published a seminal white paper entitled, Making Rare Diseases Count...

  • Published On: 31 March 2026

    EURORDIS – Rare Barometer Australian Factsheets

    EURORDIS shared factsheets with RVA presenting Australian findings from three Rare Barometer surveys.

  • Published On: 31 March 2026

    Newborn Bloodspot Screening Update: X-Linked Adrenoleukodystrophy (X-ALD)

    In December 2025, Health Ministers acknowledged to screen all newborn babies for X-ALD.

  • Published On: 27 March 2026

    New Framework Launches: ‘Recognising Consumers’ Contributions to Health Research’

    Research Australia, in collaboration with the National Centre for Epidemiology and Population Health at the Australian National University (ANU)...

  • Published On: 28 January 2026

    Published: Consultation Report for the Review of the 2016 Statement on Consumer and Community Involvement in Health and Medical Research (2025)

    In 2024 and 2025, Rare Voices Australia (RVA) contributed to the review of the 2016 Statement on Consumer and...

  • Published On: 16 September 2025

    Newborn Bloodspot Screening Update: MPS I, MPS II and Pompe Disease

    The Medical Services Advisory Committee (MSAC) has published its advice on newborn bloodspot screening (NBS)...

  • 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: 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: 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...