News

  • Final Report Tabled: Parliamentary Inquiry Into Approval Processes for New Drugs and Novel Medical Technologies in Australia
    The Standing Committee on Health, Aged Care and Sport (the Standing Committee) tabled its report into the Parliamentary Inquiry into approval processes for new drugs and novel medical technologies in Australia (Parliamentary Inquiry) in Parliament today (25 November 2021). The report, The New Frontier – Delivering better health for all Australians, contains 31 recommendations, including […]
  • Recap: 2021 Virtual National Rare Disease Summit
    Thank you to those who attended Rare Voices Australia’s (RVA) 2021 Virtual National Rare Disease Summit (the Virtual Summit) on 12 November. The Virtual Summit brought together key stakeholders in the rare disease sector including people living with a rare disease, governments, key peak bodies, researchers, clinicians and industry. The theme was, ‘A person-centred approach […]
  • Survey Opportunity: Audit of Australian Rare Disease Registries
    Rare Voices Australia (RVA) has engaged Monash University clinical registry experts, Professor Susannah Ahern and Dr Rasa Ruseckaite, to undertake an audit of Australian rare disease registries, and databases available to Australian participants. The National Strategic Action Plan for Rare Diseases (the Action Plan) identifies the key role that registries play in its Research and Data Pillar. […]
  • Time Sensitive: Share Your Experience With Patient Registry Data Interoperability
    As part of the Rare as One Project, The Chan Zuckerberg Initiative (CZI) is seeking information about registry interoperability. Responses are encouraged from patient communities, researchers, clinicians, health technology developers and a diverse range of experts to share knowledge and submit information that can help address similar challenges from different perspectives. If this is relevant to you, click […]
  • Update: Parliamentary Inquiry Into Approval Processes for New Drugs and Novel Medical Technologies in Australia
    The Standing Committee on Health, Aged Care and Sport (the Standing Committee) intend to table the Parliamentary Inquiry report into approval processes for new drugs and novel medical technologies in Australia this Thursday 25 November between 10am – 11am AEDT in Parliament. The Chair and Deputy Chair will speak to the report for five minutes […]
  • Monash University Survey: Life Insurance and Genetic Testing
    Rare Voices Australia (RVA) is pleased to share a survey from one of our research partners seeking to understand consumer experiences with life insurance and genetic testing. Led by experts at Monash University, this research aligns with the following actions in the National Strategic Action Plan for Rare Diseases: Action 2.2.2: Develop policy that supports […]
  • Systemic National Disability Insurance Scheme Advocacy — Expressions of Interest Sought
    Rare Voices Australia (RVA) has been engaging in ongoing systemic advocacy to seek pathways to ensure that the National Disability Insurance Scheme (NDIS) can better respond to the unique needs and challenges of people living with a disability caused by rare disease. This work has led to an exclusive opportunity for RVA and a limited […]
  • Australian Rare Disease Registry Audit: Project Update — August to October
    Limited data about rare diseases related to incidence and prevalence, natural history, epidemiology, impact, and treatment outcomes or a lack thereof, is driving a global emphasis on the value of rare disease registries. Registries have the capacity to: Facilitate public reporting and knowledge building Reveal differences in care practices and process and the impact of […]
  • Launch of the first Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia
    Rare Voices Australia (RVA) was proud to attend the official launch of the first Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia (WA) on 19 October. The Parliamentary Friendship Group sees the Hon Matthew Swinbourn MLC, Hon Donna Faragher MLC and Hon Stephen Pratt MLC come together to increase awareness about […]
  • Joint Standing Committee on the National Disability Insurance Scheme Parliamentary Inquiry: Independent Assessments Final Report Tabled
    On 19 October 2021, the Parliamentary Joint Standing Committee on the National Disability Insurance Scheme (NDIS) tabled its final report into the Parliamentary Inquiry into independent assessments. Click here to access the report. Rare Voices Australia (RVA) welcomes the report’s six recommendations which align with the Submission lodged by RVA into the Parliamentary Inquiry. The […]
  • New Parliamentary Senate Inquiry into Current Scheme Implementation and Forecasting for the National Disability Insurance Scheme
    The Joint Standing Committee on the National Disability Insurance Scheme (NDIS) (the Committee) is conducting a new inquiry into the current Scheme implementation and forecasting for the NDIS. The Committee will focus on how the NDIS is implemented and funded, and what supports are or should be available for people with disability in addition to […]
  • Rare Metabolic Disease Workforce Study – September 2021 Activity Update
    ‘Sustainable systems and workforce’ is one of three foundation principles of the National Strategic Action Plan for Rare Diseases (the Action Plan). One of the key priorities of the Awareness and Education Pillar of the Action Plan is to ‘develop a national rare disease workforce strategy that responds to current and future demands, including the […]
  • Australian Government Announces Five Year Strategic Agreements with the Medicines Industry
    On 7 September 2021, the Australian Government announced two new Strategic Agreements with Medicines Australia and the Generic and Biosimilar Medicines Association (GBMA). The agreements will be in place from 1 July 2022 to 30 June 2027. The agreements contain a comprehensive package of reforms that aim to ensure Australians gain access to transformative medical […]
  • Recap: Health Technology Assessment Consumer Consultative Committee’s ‘Making Connections’ Symposium
    Rare Voices Australia (RVA) staff were pleased to attend the Health Technology Assessment Consumer Consultative Committee’s (HTA CCC) ‘Making Connections’ Symposium (the Symposium) on 23 September. The Symposium brought together consumers and consumer organisations with an interest in engaging with health technology processes to build connections, share experiences and receive updates about these processes. RVA’s […]
  • Rare Voices Australia is Hiring: Operations and Compliance Manager
    RVA is looking for an Operations and Compliance Manager ​to join our passionate and dedicated team! RVA is Australia’s national non profit peak body, representing people who live with a rare disease. We are dedicated to working with all stakeholders to drive the best outcomes for Australians living with a rare disease. The successful candidate […]
  • Rare Voices Australia is Hiring: Project Officer – Mental Health and Wellbeing
    RVA is looking for a Project Officer – Mental Health and Wellbeing ​to join our passionate and dedicated team! RVA is Australia’s national non profit peak body, representing people who live with a rare disease. We are dedicated to working with all stakeholders to drive the best outcomes for Australians living with a rare disease. […]
  • Public Consultation Open: National Disability Insurance Scheme Legislation Reforms
    The Australian Government is proposing changes to National Disability Insurance Scheme (NDIS) legislation with the goal to make processes easier and better for NDIS participants. The proposed changes are informed by the outcomes of the 2019 independent review of NDIS legislation, which was conducted by David Tune AO PSM. The Government is engaging in a […]
  • Time Sensitive RVA Partner Opportunity: Influence Research and Interact with the Global Rare Disease Community
    The EURORDIS Rare Barometer Project is developing a global survey on diagnosis. EURORDIS is working with Rare Voices Australia (RVA) to include Australian perspectives in this work. EURORDIS is keen to talk to Australian rare disease organisation leaders to help them develop the final questionnaire.  The Project Team has decided to pursue a different approach […]
  • Rare Voices Australia Research Update: April — July 2021
    Rare Voices Australia (RVA) has continued investing heavily in rare disease research in 2021 to gather evidence for policy reform that leads to better outcomes for Australians living with a rare disease. We are dedicated to building an active presence in the rare disease research arena. At RVA, we work across the research continuum to […]
  • Patient or Carer Experience Survey: Strengthening the Rare Disease Healthcare Workforce in Australia
    Rare Voices Australia (RVA) has engaged Equity Economics and Development Partners to undertake a rare metabolic disease workforce study. This study aims to understand the current strengths and weaknesses in the healthcare provided to metabolic patients in Australia. The study will collect input from the metabolic healthcare workforce (e.g. clinicians, nurses, dietitians, genetic counsellors, diagnostic […]
  • Newborn Bloodspot Screening Update: Victoria
    Congratulations to RVA Partner, Congenital Adrenal Hyperplasia Support Group Australia, for their successful advocacy on behalf of their community resulting in the pilot screening for congenital adrenal hyperplasia (CAH) on the Victorian Newborn Bloodspot Screening (NBS) Program!   Rare Voices Australia (RVA) welcomes the Victorian Government’s announcement and thanks them for their ongoing engagement with RVA regarding this issue. NBS […]
  • Formation of the first Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia
    Rare Voices Australia (RVA) welcomes the formation of the first Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia (WA)! The Hon Matthew Swinbourn MLC, Hon Donna Faragher MLC and Hon Stephen Pratt MLC have come together to increase awareness about rare and undiagnosed diseases in WA. The non-partisan Parliamentary Friendship Group […]
  • Newborn Bloodspot Screening Update: Western Australia
    Rare Voices Australia (RVA) welcomes the Western Australian (WA) Government’s commitment to begin the implementation process to add congenital adrenal hyperplasia (CAH) to WA’s Newborn Bloodspot Screening (NBS) Program. Phase one of implementation involves the establishment of the required staffing and equipment, in accordance with the national recommendation endorsed by Australian Governments, to ensure the successful […]
  • Rare Voices Australia Education and Mentoring Update: May – July 2021
    Rare Voices Australia’s (RVA) Education Program and mentoring support is tailored towards the needs of individual RVA Partner organisations and their unique strategic goals and aims.  RVA’s Education Program RVA’s Education Program includes regular education webinars, sessions for individual organisations, customised mentoring support and a suite of education resources, including our soon-to-be launched Online Education […]
  • Get involved with the Australian Aplastic Anaemia and Other Bone Marrow Failure Syndromes Registry
    Thanks to the more than 250 Australians with bone marrow failure syndromes who have registered with the Australian Aplastic Anaemia and Other Bone Marrow Failure Syndromes Registry (AAR), researchers are getting a better picture of these important rare conditions in Australia. What are bone marrow failure syndromes? A healthy bone marrow is vital to produce […]
  • Rare Disease – Support, Education and Training Grant Update
    Rare Voices Australia (RVA) is excited to be a member of the consortium, led by the University of New South Wales (UNSW), that was a recipient of the Australian Government’s Rare Disease – Support, Education and Training Grant. Click here to read the Government’s media release. The $1.9 million in funding will transform Australia into […]
  • National Disability Insurance Scheme Independent Assessments Abandoned
    Rare Voices Australia (RVA) welcomes the Federal Government’s announcement that National Disability Insurance Scheme (NDIS) independent assessments will not proceed following the Disability Reform Ministers’ Meeting. We also welcome all state and territory ministers agreeing to “work in partnership with those with lived disability experience on the design of a person-centred model.” Read Senator the […]
  • Medical Research Future Fund (MRFF) Grant Success!
    Rare Voices Australia (RVA) congratulates the 17 researchers who, through the Genomics Health Futures Mission, will receive a share of $46.5 million for genomics research, which will support health clinicians to identify genetic disorders and diagnose rare diseases faster. Click here to read the Hon Greg Hunt’s media release. In line with the National Strategic […]
  • RVA is Hiring: Project Officer – Western Australia
    RVA is looking for a Project Officer in Western Australia to join our passionate and dedicated team! RVA is Australia’s national non profit peak body, representing people who live with a rare disease. We are dedicated to working with all stakeholders to drive the best outcomes for Australians living with a rare disease.  Download this PDF […]
  • RVA Partner Education Webinar Series – Rare Disease Research in Australia
    Rare Voices Australia (RVA) is hosting an education webinar series for RVA Partner organisations that focus on research as one of their key strategic areas. Such research could include discovery research, natural history research, or research to support Health Technology Assessments (HTA) for the Pharmaceutical Benefits Advisory Committee (PBAC). The webinar series  will include three […]
  • Sneak Peek: Rare Awareness Rare Education (R.A.R.E) Portal for Rare Diseases Logo
    Rare Voices Australia (RVA) is excited to officially launch the logo for the Rare Awareness Rare Education (R.A.R.E) Portal for rare diseases! The portal is currently in development and we anticipate that it will be launched in late 2022. Scroll down to view the logo. Background RVA is leading the collaborative development of the R.A.R.E […]
  • Rare Voices Australia Partners with the Western Australian Department of Health
    Rare Voices Australia (RVA) is pleased to partner with the Western Australian Department of Health (WADOH) on three projects to progress the implementation of key aspects of the National Strategic Action Plan for Rare Diseases (the Action Plan) in Western Australia (WA). The first project sees RVA partnering with the WADOH to update data systems […]
  • 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, […]
  • Victoria Enters Seven Day Lockdown
    From midnight 27 May 2021, Victoria will enter a seven day lockdown. Click here for more information.
  • 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 […]
  • COVID-19 Vaccination Rollout Information for Carers: What You Need to Know
    Rare Voices Australia (RVA) attended the COVID-19 response update for carers webinar on 23 March 2021. The webinar was hosted by Professor Michael Kidd AM, Deputy Chief Medical Officer, Department of Health. Speakers included Liz Callaghan, CEO, Carers Australia; Luke Mansfield, Group Manager, Department of Social Services; and Bridget Carrick, Director, Vaccine Taskforce, Department of […]
  • 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 […]
  • Victoria Goes into Five Day Lockdown
    Victoria has entered into a five day lockdown due to a COVID-19 cluster that continues to grow from hotel quarantine. Click here to read more.
  • 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 […]
  • Western Australia Enters Five Day Lockdown
    Effective from 6pm Sunday, 31 January 2021 until 6pm Friday, 5 February 2021, the Perth metropolitan area and the Peel and South West regions will enter a 5-day lockdown, based on health advice. See the WA Government’s COVID-19 page for more information.
  • 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).
  • Greater Brisbane Goes Into 3-day Lockdown
    Greater Brisbane will go into lockdown for three days from 6pm Friday 8 January, while contact tracers work to ensure the UK strain of COVID-19 is not circulating in the community. Click here for the latest updates.
  • 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 […]
  • COVID-19 Outbreak in NSW
    A COVID-19 outbreak on Sydney’s northern beaches has led to fresh warnings around the country and new restrictions being introduced in New South Wales. Click here for more information.
  • 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.
  • Victoria’s Restrictions to be Eased
    Metropolitan Melbourne and regional Victoria’s restrictions will be eased from 11:59pm 18 October 2020. Click here to read more.
  • 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 […]
  • Eased Restrictions for Metropolitan Melbourne
    Metropolitan Melbourne has progressed to the second step of the roadmap to reopening. See the Victorian State Government’s Second step to recovery and Roadmap to recovery webpages.
  • 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 […]
  • Victoria’s Roadmap out of Melbourne Lockdown
    On 6 September, Victorian Premier, Daniel Andrews, outlined Victoria’s roadmap out of Melbourne lockdown and stage 3 COVID-19 restrictions. Click here for the latest information.
  • 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 […]
  • State of Disaster – Victoria
    Victoria has enacted a state of disaster to enforce COVID-19 restrictions – click here for more. 
  • Face Coverings Mandatory for Regional Victorians
    From 11.59pm on Sunday, August 2, face coverings will become mandatory for regional Victorians. Face coverings are already mandatory for Melbourne and Mitchelle Shire. Victoria has also suspended elective surgeries except for Category 1 and the most urgent Category 2 surgeries – click to read more.
  • Face Coverings Mandatory for Melbourne
    Face coverings are now mandatory for Melbourne and Mitchell Shire – read more.
  • Face Masks Recommended
    Victoria’s Chief Health Officer is now recommending that people in Melbourne and Mitchell Shire, under stage 3 restrictions, wear face masks when outside the home if it is difficult to keep 1.5 metres away from others. Click here for more information.
  • Government COVID-19 Roadmap
    The Government has announced the roadmap to a COVID-19 safe Australia in three stages. Click here to read the detailed plan of the steps.
  • Flexible School Attendance Requirements
    RVA has reached out to all state education ministers and Chief Health Officers regarding the need for flexible school attendance requirements for the rare disease community. Here is a template of the letter that has been sent. We encourage you to use this letter in your ongoing individual advocacy.  Responses received to date:     Western Australia – Dr Andrew […]
  • COVIDSafe App Released
    The Australian Government has released its COVIDSafe app for smartphones. The app is available to download for free via the Apple or Google app stores. Its purpose is to identify people who may have come into contact with someone who has COVID-19 so that they can be advised to take measures to help stop the […]
  • Medicines Australia acknowledges the Government’s decision to temporarily allow for substitution of dose strengths
    20/04/2020 –   During the current COVID-19 pandemic, Medicines Australia acknowledges the Government’s decision to temporarily allow for substitution of dose strengths or forms of medicines by a pharmacist without reference to the patient’s doctor only if the originally prescribed medicine is in serious shortage (as deemed by the TGA) at the time. This should […]
  • COVID-19 Pandemic: Critical Care Guidelines for Australians Living with a Rare Disease
    On 8 April 2020, RVA released this statement, 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 distributed the statement publicly and reached out to our state government contacts as well as all state Chief Health Officers, expressing our interest in facilitating […]
  • 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 […]
  • NDIS: Priority Home Delivery Services
    From Monday 6 April, NDIS participants can purchase grocery items online to be delivered to their home. Click here to read more.
  • Medicine Supplies in Australia
    Medicines Australia (MA) is advising that Australia has sufficient supplies of medicines and are strongly discouraging the stockpiling or panic buying of medicines. It’s important that people, including those living with a rare disease, only obtain the medicines they immediately require. MA has encouraged pharmacists and GPs to help manage the supply of medicines and […]
  • COVID-19 updates from the National Disability Insurance Agency
    Here is a snapshot of the COVID-19 updates as of 25/3 from the National Disability Insurance Agency (NDIA): – If a participant has a scheduled plan review, the NDIA will contact them by phone or email to undertake their review. As part of this plan review process, a participant can discuss having a new plan […]
  • Priority Testing and Turnaround times
    RVA has reached out to all state Health Ministers and Chief Health Officers to request that they prioritise COVID-19 testing and turnaround times for people living with a rare disease who are displaying symptoms. Here is a template of the letter that has been sent. We encourage you to use this letter in your ongoing individual advocacy.  […]
  • Life Saving Drugs Program (LSDP)
    RVA is liaising with our RVA Partners that represent members in their community who access the LSDP to ascertain the full potential impacts of COVID-19 on the LSDP. We will communicate any updates as we have them. RVA is aware that the consumer nominee on the LSDP Expert Panel has pro-actively been communicating with the […]
  • Support for NDIS participants and providers through COVID-19
    Rare Voices Australia welcomes new measures announced to support NDIS participants and providers through COVID-19. Click here to read the Hon Stuart Robert MP’s media release.
  • Access to Medicines
    Medicines Australia is advising that there are no anticipated shortages of medicines due to COVID-19. This means there is no need for anyone, including those living with a rare disease, to stock up with more than their usual supply of medicines. Click here to read more.
  • COVID-19: message from Rare Voices Australia
    You can read the first full message that RVA distributed regarding COVID-19 here.
  • 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 […]