Organisation : Rare Voices AustraliaLocation : Australia (The successful applicant may be based in or near any Australian capital city or major regional centre.)Work type : Part-timeProfession : Policy & ResearchSector : OtherSalary type : Annual PackageSalary : $80k per annum full-time equivalent pro rata, plus superApplication closing date : 31 Jan, 2021 About the role The Research and Evaluation Officer will play a […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]