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  • Published On: 29 June 2023

    New Rare Disease Project ECHO® Workshop Sessions for Health Professionals

    By popular demand, five additional Project ECHO® workshop sessions for health professionals have been announced....

  • Published On: 29 June 2023

    ‘Hope in Clinical Trials: Advancing Research for Rare Diseases’: Parliamentary Friends of People with Rare and Undiagnosed Diseases – Western Australia

    Rare Voices Australia (RVA) was pleased to contribute to a Parliamentary Event on 19 May hosted by the Parliamentary Friends of People with Rare...

  • Published On: 12 April 2023

    Public Consultation 1 Commences: Health Technology Assessment (HTA) Policy and Methods Review

    The Department of Health and Aged Care has advised that the first round of public consultation for the Health Technology Assessment (HTA)...

  • Published On: 29 March 2023

    Published: Principles for consumer involvement in research funded by the Medical Research Future Fund (MRFF) – March 2023

    In March, the Australian Government Department of Health and Aged Care published Principles for consumer involvement...

  • Published On: 22 March 2023

    Terms of Reference Published: Health Technology Assessment Policy and Methods Review

    The Australian Government Department of Health and Aged Care has published the terms of reference...

  • Published On: 27 February 2023

    National Disability Insurance Scheme (NDIS) Advocacy Update: February 2023

    Rare disease appropriate National Disability Insurance Scheme (NDIS) supports and planning are an ongoing focus of Rare Voices Australia’s (RVA) advocacy...

  • Published On: 23 February 2023

    2023 Rare Disease Day Parliamentary Event: Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia

    Rare Voices Australia (RVA) was pleased to attend a Rare Disease Day Parliamentary Event on 21 February hosted...

  • Published On: 31 January 2023

    RVA Partner Opportunity: Youth Mental Health First Aid Training

    Rare Voices Australia (RVA) is pleased to continue our work in 2023 with Mental Health First Aid (MHFA) Australia...

  • Published On: 30 January 2023

    Rare Voices Australia Congratulates Childhood Dementia Initiative on the Recent Launch of the Childhood Dementia Knowledgebase!

    Rare Voices Australia (RVA) Partner, Childhood Dementia Initiative (CDI), recently launched the Childhood Dementia...

  • Published On: 18 January 2023

    Expressions of Interest: Consumer Representatives With Lived Experience of a Genetic Condition and/or the Genetic Services of Western Australia

    Western Australia’s (WA) Department of Health recently released the WA Genomics Strategy...

  • Published On: 20 December 2022

    Refreshed National Medicines Policy (NMP) Delivered to the Australian Government

    The Hon Mark Butler MP, Minister for Health and Aged Care, has announced the updated National Medicines Policy (NMP)...

  • Published On: 23 November 2022

    First Ever Global Consensus Clinical Care Guidelines for Sanfilippo Syndrome

    The first-ever global consensus clinical care guidelines (guidelines) for Sanfilippo Syndrome have been published. RVA Partner Sanfilippo Children’s Foundation...