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 […]
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. […]
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 […]
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 (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 […]
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 […]
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 […]
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 […]
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’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 […]
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 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 […]
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 […]
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 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 […]
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 […]
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 (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 […]
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 […]
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, […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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.
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 […]
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 […]
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 […]
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 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.
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 […]
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 […]
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.
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.
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 […]
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.
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 […]
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.
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 […]
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.
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.
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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. […]
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 […]
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.
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.
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 […]
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 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 […]
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 […]
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 […]
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.
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 […]
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 […]
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 […]
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.
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.
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 […]
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 […]
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 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 […]
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.
Disability Discrimination Commissioner Graeme Innes chaired a RightsTalk discussion at the Human Rights Commission in Sydney. RVA attended the live discussion.
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
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You are now leaving the Rare Voices Australia website to go to the Orphanet website.
Orphanet is a globally renowned portal for rare diseases and orphan drugs. The portal aims to provide high-quality information about rare diseases, and ensure equal access to knowledge for all stakeholders.
Please click here to continue to Orphanet: www.orpha.net
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 (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 […]
From midnight 27 May 2021, Victoria will enter a seven day lockdown. Click here for more information.
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 […]
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 […]
