News

  • Newborn Bloodspot Screening Update: Changes to the Assessment Process for Nominated Conditions
    The Department of Health has announced changes to the assessment process for nominated conditions conducted under the Newborn Bloodspot Screening (NBS) National Policy Framework (the Framework). Under the Framework, anyone in Australia can nominate a condition to be added or removed from NBS programs. Moving forward, as stated on the Department of Health’s website: “When […]
  • Andrew Bannister wins the Masonic Care WA/Freemasons WA Community Service and Volunteering Award and the People’s Choice Award
    Rare Voices Australia (RVA) congratulates rare disease advocate, Andrew Bannister, who has been announced as the winner of the Masonic Care WA/Freemasons WA Community Service and Volunteering Award at the Young Achievers Award WA. Andrew also won the People’s Choice Award. Thank you to everyone who voted for Andrew. RVA thanks the Hon. Matthew Swinbourn MLC, […]
  • Australian Clinical Trials Alliance: Have your say on secondary use of data in clinical research
    Interested in secondary use of data for Australian research? Invitation to take part in Australian Clinical Trials Alliance’s (ACTA) online webinar and virtual consultation workshop on behalf of the Australian Research Data Commons (ARDC). Response requested by 1 June 2021. ACTA is working with the ARDC to gather insights and feedback about the Health Studies Australian […]
  • United Nations General Assembly Resolution on Persons Living with a Rare Disease and their Families
    The global community of persons living with a rare disease, their families, and civil society organisations, with the support of UN member states, are calling for the adoption of the upcoming United Nations General Assembly (UNGA) Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families” (Resolution on PLWRD). This […]
  • MRFF Rare Cancers Rare Diseases Unmet Need grant open
    A new Medical Research Future Fund (MRFF) Rare Cancers Rare Diseases Unmet Need grant has opened. Applications to this grant opportunity must propose research that addresses one of the seven Streams of research outlined in the grant. Click through for more information.  The close date and time is 18 August 2021 at 5pm (ACT local […]
  • Federal Budget 2021-22 and Australians living with a rare disease
    On Tuesday 11 May 2021, Treasurer Josh Frydenberg announced the Morrison Government’s 2021-22 Federal Budget.  As the peak body for Australians living with a rare disease, Rare Voices Australia (RVA) attended the Department of Health’s Portfolio Briefing webinar presentation and Q&A with the Hon Greg Hunt MP (Minister for Health and Aged Care); Senator the […]
  • Article Published in Journal of Paediatrics and Child Health
    Rare Voices Australia (RVA) Scientific and Medical Advisory Committee members, Kaustuv Bhattacharya, Yvonne Zurynski and Adam Jaffe, have written an article for the Journal of Paediatrics and Child Health, alongside RVA’s CEO, Nicole Millis. The article is titled, Rare diseases research and policy in Australia: On the journey to equitable care. Click here to download […]
  • Compulsory NDIS Assessments Placed on Pause
    Senator the Hon. Linda Reynolds CSC, Minister for the National Disability Insurance Scheme (NDIS), has placed compulsory NDIS assessments on pause. Rare Voices Australia (RVA) welcomes this initial move and will continue monitoring this situation.  As stated in our Submission to the Joint Standing Committee on the NDIS Parliamentary Inquiry into Independent Assessments, RVA does […]
  • RVA Partner Education Webinar: Sustainable Funding and Fundraising for the Rare Disease Sector
    Sustainable, secure funding remains one of the key challenges for rare disease organisations. RVA is hosting an education webinar for Rare Voices Australia (RVA) Partner organisations that is designed to assist you in considering your organisation’s approach to fundraising and how to manage funds generated. The webinar will draw on the experiences of the rare […]
  • Survey: Inform WA Health Department About Support Required by Rare Disease Community Groups
    In Western Australia, hundreds of peer support groups and other Non Governmental Organisations (NGOs) provide crucial support for those living with rare, genetic, and undiagnosed conditions. During the COVID-19 pandemic, this cohort/sector has been recognised by the State Government as being amongst the most vulnerable in the community.  As such, the WA Department of Health (Office […]
  • 2021 Rare Disease Day Media Pack
    Rare Disease Day will be marked on Sunday 28 February. The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on people’s lives. A number of landmarks around Australia will be illuminated to mark Rare Disease Day (click here to see the […]
  • Dr Jim McGill receives 2021 Australia Day Honours
    Rare Voices Australia (RVA) congratulates Dr Jim McGill on his 2021 Australia Day Honour for significant service to metabolic medicine, to biochemical genetic pathology, and to medical education. Dr McGill is a longtime champion of rare diseases. He is a world leading expert in a range of metabolic conditions and is a leader in providing […]
  • “Together we are Stronger”: Transforming Uncertainty Into Hope
    This article is part of Rare Voices Australia’s new Changemakers series. Click here to find out more and to share your story. Learn how one family’s 14-year diagnostic odyssey led to the birth of SCN2A Australia. Kris Pierce took her newborn son, Will, home from hospital amid a mountain of grief. Will was diagnosed with […]
  • WA Department of Health Stakeholder Consultation Focus Groups
    The Western Australia Department of Health, Office of Population Health Genomics (OPHG) is currently reviewing the supports, services and systems available to West Australians living with rare, genetic and undiagnosed conditions and their families, and how the community navigates these systems. If you live in Western Australia (WA), the OPHG would like to know more […]
  • RVA is Hiring: Research & Evaluation Officer
    The Research and Evaluation Officer will play a key role in facilitating the collaborative implementation of the National Strategic Action Plan for Rare Diseases (the Action Plan).
  • RVA Education Webinar: NDIS Parliamentary Inquiry and Consultation Processes
    Rare Voices Australia (RVA) welcomes the opportunity to provide input from a rare disease perspective into changes being made to the National Disability Insurance Scheme (NDIS). RVA will be a lodging a submission into: The National Disability and Insurance Agency’s (NDIA) consultation into access and eligibility policy with independent assessments. The Joint Standing Committee on […]
  • RVA Education: National Disability Insurance Agency Public Consultations Guide
    The National Disability Insurance Agency (NDIA) would like to hear from you regarding the changes they are making to the NDIS. The NDIA has released three public consultation papers and one report: 1. Consultation paper: access and eligibility policy for independent assessments2. Consultation paper: planning policy for personalised budgets and plan flexibility3. Consultation paper: supporting […]
  • RVA Poster Presentation for HGSA Virtual Conference 2020
    Rare Voices Australia (RVA) attended the Human Genetics Society of Australasia’s (HGSA) Virtual Conference on 24 and 25 November 2020. RVA was pleased to present our poster, The National Strategic Action Plan for Rare Diseases: A Collaborative Multi-stakeholder Approach to Effective Rare Disease Policy Reform. Click here to view RVA’s poster.
  • Federal Budget 2020-21 and Rare Disease
    On Tuesday evening, Treasurer Josh Frydenberg, announced the Morrison Government’s 2020-21 Federal Budget. As the peak body for Australians living with a rare disease, Rare Voices Australia (RVA) attended the Department of Health’s Portfolio Briefing webinar presentation and Q&A with the Hon Greg Hunt MP (Minister for Health); Senator the Hon Richard Colbeck (Minister for […]
  • RVA Position Statement: Government Response to the Tune Review of the NDIS Act 2013
    On 28 August 2020, the Federal Government announced its response to the review of the National Disability Insurance Scheme (NDIS) Act 2013 conducted by former senior public servant, David Tune. The Tune Review made 29 recommendations to improve the way the NDIS operates. Rare Voices Australia (RVA) has reviewed the information the Government released on […]
  • Parliamentary Inquiry Support Materials
    As you may be aware, the House of Representatives Standing Committee on Health, Aged Care and Sport (the Committee), Chaired by Trent Zimmermann MP and Dr Mike Freelander MP, has commenced a Parliamentary Inquiry into new drugs and novel medical technologies. The inquiry will include a particular focus on access to the treatment of rare […]
  • COVID-19 Pandemic: Critical Care Guidelines for Australians Living with a Rare Disease
    Rare Voices Australia (RVA) has released this statement today, which has been developed in conjunction with our Scientific and Medical Advisory Committee following the COVID-19 press release issued by EURORDIS on 31 March 2020. RVA is calling for the urgent development and use of critical care guidelines for people living with a rare disease to […]
  • COVID-19: Message from Rare Voices Australia
    As the COVID-19 pandemic continues, the team at Rare Voices Australia (RVA) shares our best wishes to those impacted personally and to the wider community during these uncertain times. We feel now is a good opportunity to distribute the below information. Our Rare Disease Community Members of our rare disease community may be particularly vulnerable […]
  • Federal Budget 2019-20 and Rare Disease
    On Tuesday evening, Treasurer Josh Frydenberg announced the Morrison Government’s 2019-20 Federal Budget. As a peak body, Rare Voices Australia (RVA) attended the Department of Health 2019-20 Federal Budget Briefing in Canberra. In the lead-up to and beyond the election (reports indicate that an announcement is imminent), RVA will continue to work with all Parliamentarians […]
  • RVA Board of Directors Positions
    RVA currently has vacancies for volunteer directors on our Board. Board meetings are held via teleconference every 2 months and involve 1 to 2 hours of pre-reading. We are looking for people with skills and capabilities that will help RVA improve the lives of Australians living with a rare disease. In particular, we are looking […]
  • Healthcare Experiences of Adults Living with a Rare Disease in Australia Survey Results
    In 2014 an online survey was conducted to explore the healthcare experiences of Australian adults living with a rare disease.
  • Alan Bittles Receives OAM
    RVA would like to congratulate Alan Bittles for receiving an Order of Australia Medal for ‘For significant service to medical education in the field of genomics, as an academic and researcher, and to professional groups’. “It came as a total surprise to me,” Alan said. “I hadn’t a clue this was in the offing. I […]
  • International Joint Recommendations for Undiagnosed Rare Disease Patients Dissemination Paper
    On behalf of patients living with undiagnosed and rare diseases across Europe, North America, Australia and Japan, SWAN UK (the support group run by Genetic Alliance UK); the Wilhelm Foundation, EURORDIS (Rare Diseases Europe); Rare Voices Australia (RVA); the Canadian Organization for Rare Disorders (CORD); the Advocacy Service for Rare and Intractable Diseases’ stakeholders in […]
  • Rare Voices Australia Rare Disease Registry Workshop
    The focus of the workshop was to visit nine short papers that talked to a range of issues concerning rare disease registries as well as exploring the benefits of a rare disease registry in Australia to people diagnosed with a rare disease. Click here.
  • HGSA Conference and RVA Rare Disease Registry Workshop
    Rare Voices Australia (RVA) attended the Human Genetics Society of Australasia’s (HGSA) 40th Annual Scientific Meeting in Hobart. The theme was ‘Integrating Genomics into Healthcare’ and there was certainly a ‘genomics’ buzz throughout the conference. There was also an important focus on rare disease registries. The HGSA conference program included a plenary session on the […]
  • Fair for Rare Campaign
    Rare Voices Australia is advocating for people living with a rare disease to have equal access to safe, effective treatments and healthcare management in a coordinated and adequately resourced approach throughout the country. The Fair for Rare Campaign enables people living with a rare disease to share their journey of living with their particular rare […]
  • European Conference on Rare Disease & Orphan Products (ECRD)
    ‘Game Changers in Rare Diseases, Delivering 21st Century healthcare to rare disease patients: Together we can change the future!’
  • RVA Appoints Executive Officer
    The board of Rare Voices Australia is pleased to announce that Nicole Millis has been appointed to the role of Executive Officer for RVA, and has taken up her appointment this week. This follows a period of  nine months where Nicole held a position on the board of RVA and impressed us with her strong […]
  • The Forgotten Ones Photographic Exhibition Opening Night
    An emotive opening night of the exhibition that celebrates and recognises the unspoken and often forgotten support that siblings provide to loved ones suffering from a rare disease.
  • Melissa Parke MP Speaks out for Rare Diseases
    Last Wednesday Melissa Parke MP attended a Parliamentary BBQ hosted by Rare Voices Australia, where Professor Ravi Savarirayan of the Murdoch Children’s Research Institute emphasised that rare diseases are in fact not all that rare.
  • Australia Day Honours – Congratulations Megan Fookes of RVA
    Megan Fookes was overwhelmed when she was awarded the title of OAM for her work in the rare disease community of Australia.
  • European Conference on Rare Diseases, 26 – 28 May 2016
    In its eighth year, the ECRD brings together over 80 speakers and more than 800 participants, covering six themes over two days, including the latest research, new treatments, innovations in healthcare and more. The focus in 2016 is on Game Changers in Rare Diseases. Rare Voices Australia is an official Associate Partner for ECRD. The […]
  • Policy News – December 2015
    Rare Voices Australia has been very busy behind the scenes actively partaking in a range of public policy forums, taskforce meetings.
  • Partners in Patient Health Asia Pacific Forum 2015
    RVA was invited to attend the Partners in Patient Health Asia Pacific Forum 15 & 16 October in Singapore.
  • Rare Disease Day 2016 – ‘Patient Voice’
    2016 marks the ninth year that the international rare disease community celebrates Rare Disease Day.
  • Newborn Screening Working Group – Final Consultation Workshop
    A second and final newborn screening consultation workshop was held on 12 August 2015, to discuss the development of a national policy framework for newborn bloodspot screening. RVA attended alongside 39 stakeholders from across the country. Attendees included academics, clinicians, consumers, industry, laboratory scientists, pathologists, program managers, policy makers, and representatives of colleges and professional […]
  • Contact Your Federal MP
    Rare Voices Australia launched the Parliamentary Friends of Rare Diseases in November 2014. RVA Patron, The Honorable Michael Kirby, welcomed Parliamentarians at a special bi-partisan event held at Parliament House Canberra. All Ministers and Senators are members of Parliamentary Friends of Rare Disease. How can you help? Have you ever told your local Federal MP […]
  • Healthier Medicare and PBAC Guidelines Review
    Healthier Medicare The Australian Government is inviting health consumers to contribute to the reform of the health system and delivering a Healthier Medicare. One of the priority areas is better supporting people with chronic and complex health conditions, including mental health conditions, through primary health care. There was a survey that has been announced alongside […]
  • Rare Disease Communique – Has Your Organisation Signed?
    RVA is calling for support from all Rare Disease stakeholders to show their form endorsement by signing and featuring their group’s logo.
  • Minister Agrees to Finding a Solution to the IEM Food Grant Cessation
    Federal Minister Sussan Ley recently stated they intend to take responsibility for the cessation of the IEM food grant and rectify the situation soon.
  • Research News – Victoria
    Great news for people living with undiagnosed rare diseases in Victoria. Premier Daniel Andrews MP has provided $25 million for state-wide genomic sequencing program.
  • RVA Board of Directors Strategy Day
    The Rare Voices Australia Board of Directors met for their annual Strategic Planning Day at the University of Western Sydney.
  • National Plan Engagement Roadshows
    Key findings from the Rare Voices Australia National Roadshows in 2014 will be presented at the Rare Disease Summit in Melbourne 27-28 March 2015.
  • Graeme Innes Speaks on Access to Justice for People with Disabilities
    Disability Discrimination Commissioner Graeme Innes chaired a RightsTalk discussion at the Human Rights Commission in Sydney. RVA attended the live discussion.
  • Rare Sweet Day for Rhiannen Sugars
    Rhiannen Sugars wants people to know that February 28 is Rare Disease Day, a new way of raising awareness people impacted by rare diseases.
  • Un-Doctored
    RVA Board Director Dr Tracy Dudding recently attended the Royal College of Pathologists of Australasia’s Pathology Update.
  • Genetic Revolution Offers Hope
    The genetic revolution offers hope to the ‘orphans’ of the health system
  • Woman Speaks Out for People with Rare Diseases
    New RVA supporter, Kath of Deer Park VIC, talks of her daily struggle living with a rare disease and the hope that RVA brings to her and her family