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RVA News

  • 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

    Rare Disease Disability Advocacy Update: August 2024

    As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) remains committed to advocating for people living with a rare disease...

  • Published On: 29 August 2024

    The Navigator Project: Progress Update – August 2024

    As the lead consortia member on The Navigator Project, which is funded by the Department of Health and Aged Care, Rare Voices Australia (RVA)...

  • 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

    Rare Voices Australia Recap: Human Genetics Society of Australasia’s 47th Annual Scientific Meeting

    Rare Voices Australia’s (RVA) Education and Advocacy Manager, Louise Healy, and Research and Evaluation Manager, Dr Falak Helwani...

  • 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: 31 July 2024

    New Mental Health and Rare Disease Resources for Western Australian Consumers and Health Professionals

    Rare Voices Australia, with support from Western Australia’s (WA) Office of Population Health Genomics (OPHG), has progressed aspects...

  • Published On: 30 July 2024

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

    On 28 June 2024, Rare Voices Australia (RVA) was invited to a public hearing to present to the Joint Standing Committee...

  • 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...