Categories

News

RVA News

  • Published On: 24 June 2026

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

    Rare Voices Australia (RVA) welcomes the release of Australia’s first National Health and Medical Research Strategy 2026–2036 (the Strategy), a landmark step towards a more coordinated, equitable and impact-focused health...

  • Published On: 29 May 2026

    Australia’s First National Health and Medical Research Strategy Released

    Rare Voices Australia (RVA) welcomes the release of Australia’s first National Health and Medical Research Strategy 2026–2036 (the Strategy), a landmark step towards a more coordinated, equitable and impact-focused health...

  • Published On: 25 May 2026

    Published: NHMRC Statement on Consumer and Community Involvement in Health and Medical Research

    The National Health and Medical Research Council (NHMRC) and the Consumers Health Forum of Australia (CHF) have released the new Statement on Consumer and Community Involvement in Health and Medical Research (the Statement).

  • 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)...