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RVA News

  • Published On: 18 February 2025

    Newborn Bloodspot Screening Program Update: February 2025

    Australia’s Health Ministers have agreed to add biotinidase deficiency as a target condition in Newborn Bloodspot Screening (NBS) programs nationally...

  • Published On: 10 November 2024

    Consumer Member Selection Criteria: HTA Policy & Methods Review Recommendations Implementation Group

    The Hon Mark Butler MP’s office has reached out to Rare Voices Australia, Patient Voice Initiative and Lymphoma Australia and asked us...

  • Published On: 30 September 2024

    The Revised Australian Framework for National Clinical Quality Registries 2024

    Rare Voices Australia (RVA) congratulates the Australian Commission on Safety and Quality in Health Care on the revised Australian Framework for National Clinical Quality Registries 2024...

  • Published On: 19 September 2024

    Medical Research Future Fund monitoring, evaluation and learning strategy Update

    On 29 August 2024, the Health and Medical Research Office (HMRO), held a public webinar to share updates to the Medical Research Future Fund...

  • Published On: 12 September 2024

    Final Reports Published: Health Technology Assessment Policy and Methods Review and Enhanced Consumer Engagement Process

    Rare Voices Australia (RVA) welcomes the publication of the Health Technology Assessment (HTA) Policy and Methods Review final report...

  • Published On: 29 August 2024

    Revised Australian Framework for National Clinical Quality Registries (2024) Released

    The Australian Commission on Safety and Quality in Health Care (the Commission) has released the revised Australian Framework for National Clinical Quality Registries...

  • Published On: 27 August 2024

    Australia and the World Health Assembly Resolution on Rare Diseases

    Rare Diseases International (RDI) is working with its members, including Rare Voices Australia (RVA), to call for a World Health Assembly (WHA)...

  • Published On: 30 July 2024

    Newborn Bloodspot Screening Update: July 2024

    Newborn bloodspot screening (NBS) is an important program that supports the earliest possible diagnosis of some rare diseases...

  • Published On: 24 July 2024

    Launched: Department of Health and Aged Care’s Australian Health and Medical Research Workforce Survey

    In May 2024, the Hon Mark Butler MP, Minister for Health and Aged Care, announced the Australian Government’s commitment...

  • Published On: 27 June 2024

    Update: Review of the National Health and Medical Research Council Statement on Consumer and Community Involvement in Health and Medical Research

    The National Health and Medical Research Council (NHMRC) is currently reviewing the Statement on Consumer and Community...

  • Published On: 17 June 2024

    Department of Health and Aged Care Publishes Its ‘Newborn bloodspot screening expansion – Readiness assessment executive summary’

    To better understand Australian newborn bloodspot screening (NBS) programs, the Department of Health and Aged Care commissioned...

  • Published On: 29 January 2024

    Joint Standing Committee on the National Disability Insurance Scheme – Participant Experience in Rural, Regional and Remote Australia

    The Joint Standing Committee on the National Disability Insurance Scheme (NDIS) has initiated a new inquiry into the NDIS...