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RVA News

  • Published On: 15 September 2023

    Rare Voices Australia Statement: Aboriginal and Torres Strait Islander Voice to Parliament

    As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is dedicated to driving the best outcomes for Australians living with a rare disease...

  • Published On: 31 August 2023

    Rare Voices Australia Is Hiring: Project Manager – The Navigator Project (Rare and Complex Disease Telehealth Nurse Program)

    Rare Voices Australia (RVA) is looking to recruit a Project Manager for The Navigator Project (Rare and Complex Disease Telehealth Nurse Program)...

  • Published On: 31 August 2023

    Rare Voices Australia Is Hiring: RARE Helpline Manager

    Rare Voices Australia (RVA) is looking to recruit a RARE Helpline Manager. The suitable candidate will have a range of responsibilities, including managing and supervising the day-to-day operations...

  • Published On: 31 August 2023

    Rare Voices Australia Is Hiring: Communications and Information Officer

    Rare Voices Australia (RVA) is looking to recruit a Communications and Information Officer. The suitable candidate will have a range of responsibilities...

  • Published On: 31 August 2023

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

    As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is continuing our National Disability Insurance Scheme (NDIS)...

  • Published On: 31 August 2023

    Call for Expressions of Interest: Engagement with Three Consumer-Led Rare and Complex Disease Organisations

    Rare Voices Australia (RVA) is progressing work on The Navigator Project, which was named the recipient of the Rare and Complex Disease Telehealth Nurse Program grant...

  • Published On: 29 August 2023

    Rare Voices Australia’s Submission on the Future Governance and Administration of Australian Health and Medical Research Funding

    Combined, the National Health and Medical Research Council’s Medical Research Endowment Fund (MREA) and the Medical Research Future Fund (MRFF)...

  • Published On: 28 August 2023

    Medical Research Future Fund (MRFF) Grant Success for Rare Disease

    One of Rare Voices Australia’s (RVA) formal research partnerships was chosen for funding under the Medical Research Future Fund (MRFF)...

  • Published On: 27 August 2023

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

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

  • Published On: 15 August 2023

    Louise Healy, RVA’s Education and Advocacy Manager, Appointed to Expert Advisory Group on Genomics Australia

    The Department of Health and Aged Care has announced the Expert Advisory Group (EAG) on Genomics Australia, a new national genomics body...

  • Published On: 31 July 2023

    Launched: Recommendations for a National Approach to Rare Disease Data

    Rare Voices Australia (RVA) and Monash University have published Recommendations for a National Approach to Rare Disease Data...

  • Published On: 13 July 2023

    Rare Voices Australia Leads Successful Medical Services Advisory Committee Application Working In Collaboration With Tuberous Sclerosis Australia

    The Medical Services Advisory Committee (MSAC) has published the successful outcome of Application No. 1702 – Abdominal MRI for rare genetic conditions...