News

  • RVA Education: Expansion of Newborn Bloodspot Screening Public Consultation
    On 11 November 2022, at Rare Voices Australia’s (RVA) National Rare Disease Summit, the Hon Mark Butler MP, Minister for Health and Aged Care, announced a public consultation on the expansion of newborn bloodspot screening (NBS). This announcement followed the Australian Government’s commitment to invest $39 million over four years to expand NBS to include […]
  • First Ever Global Consensus Clinical Care Guidelines for Sanfilippo Syndrome
    The first-ever global consensus clinical care guidelines (guidelines) for Sanfilippo Syndrome have been published. RVA Partner Sanfilippo Children’s Foundation (Australia) has collaborated with Cure Sanfilippo Foundation (United States of America), people living with Sanfilippo Syndrome and over 100 clinicians globally to develop and publish the guidelines. Establishing consensus among medical professionals with expertise in the […]
  • Rare Voices Australia Statement: Budget October 2022-23
    On Tuesday, 25 October 2022 the Hon Dr Jim Chalmers MP (Treasurer of Australia) announced the Albanese Government’s October 2022-23 Federal Budget. In a media release, the Hon Mark Butler MP, Minister for Health and Aged Care, stated, “This is a Budget for the health of every Australian.” As the national peak body for Australians […]
  • Parliamentary Event: Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia
    Rare Voices Australia’s (RVA) Chief Executive Officer, Nicole Millis, was pleased to attend a Parliamentary Event in Western Australia (WA) on 19 October hosted by the Parliamentary Friends of People with Rare and Undiagnosed Diseases in WA (the Parliamentary Friends Group). Clin/Prof Gareth Baynam, who is a member of RVA’s Scientific and Medical Advisory Committee […]
  • Sector-Wide Evaluation: National Strategic Action Plan for Rare Diseases Implementation
    The Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan) was launched in February 2020, over two years ago. Since that time, the rare disease sector has been collaboratively progressing implementation of the Action Plan. To gauge how far we have come, Rare Voices Australia (RVA) is leading an evaluation of the […]
  • Rare Voices Australia Parliamentary Event – 5 September 2022
    Rare Voices Australia (RVA) thanks everyone who attended our Parliamentary Event in Canberra today hosted by the Chair of the Standing Committee on Health, Aged Care and Sport, Dr Mike Freelander MP. We thank Dr Freelander, Member for Macarthur and Co-Chair of the Parliamentary Friends of Australians Living with Rare Diseases, and the following Parliamentarians […]
  • RVA Welcomes Equity of Access for Australians Living with Phenylketonuria (PKU)
    RVA welcomes the announcement that the Pharmaceutical Benefits Scheme (PBS) listed treatment for Phenylketonuria (PKU) will now be accessible to all Australians living with PKU who are responsive to treatment. RVA provided a consumer comment regarding this treatment that, in line with the National Strategic Action Plan for Rare Diseases (the Action Plan), highlights the […]
  • National Medicines Policy Review Resumes
    Rare Voices Australia (RVA) welcomes the resumption of the National Medicines Policy (NMP) Review. Finalisation of the NMP Review was extended until after the Federal Election in May 2022. The Hon Mark Butler MP, Minister for Health and Aged Care, has reappointed Professor Michael Kidd AM as the sole reviewer to complete the Review and […]
  • Webinar for Health Consumers and Consumer Advocates with the Hon Mark Butler MP: Consumers Health Forum of Australia 
    The Consumers Health Forum of Australia (CHF) hosted a webinar on Friday 5 August with the Hon Mark Butler MP, Minister for Health and Aged Care. Rare Voices Australia’s (RVA) Chief Executive Officer, Nicole Millis, was pleased to be one of eight health consumer advocates who had the opportunity to ask the Minister a question […]
  • RVA Welcomes Announcement That Pharmaceutical Benefits Scheme Listed Treatment for Spinal Muscular Atrophy (SMA) Will Be Extended to Adults
    Rare Voices Australia (RVA) welcomes the Hon Mark Butler MP’s announcement that, from 1 August 2022, the Pharmaceutical Benefits Scheme (PBS) listed treatment for spinal muscular atrophy (SMA) will be extended to adults whose symptoms appeared before 19 years of age. Read more. Until now, there have been no treatment options available on the PBS […]
  • RVA Partner Organisations: November Mental Health First Aid Training Accreditation
    Rare Voices Australia (RVA) is working with Mental Health First Aid (MHFA) Australia to offer RVA Partner organisations the opportunity to train one leader in their organisation as a MHFA Officer.  One aim of this project is to build the capacity of rare disease organisations to provide wellbeing and mental health support to their rare […]
  • Update: Progress Towards a National Strategy for Australia’s Rare Metabolic Diseases Workforce
    In February 2022, Rare Voices Australia (RVA) and Equity Economics and Development Partners launched the Rare Metabolic Disease Workforce White Paper: Towards a Strengthened Rare Disease Workforce for Australia (the White Paper). This pilot project, focusing on the workforce challenges of the rare metabolic disease workforce, is an initial step to progress the development of […]
  • Update: Australian Commission on Safety and Quality in Health Care’s National One Stop Shop and Clinical Trials Front Door
    For many people living with a rare disease, participation in clinical trials is the only way to access  treatment. The National Strategic Action Plan for Rare Diseases (the Action Plan) outlines the importance of streamlining processes in Australia to reduce the barriers to clinical trials for rare disease; the National One Stop Shop and National […]
  • RVA is Hiring: Education Project Officer
    Rare Voices Australia (RVA) is excited to be expanding our team! We are looking to recruit an Education Project Officer. The suitable candidate will have a range of responsibilities, including to help develop and facilitate a range of education sessions and resources to contribute to RVA’s national Education Program. If you have proven experience in […]
  • RVA is Hiring: Communications and Administrative Officer
    Rare Voices Australia (RVA) is excited to be expanding our team! We are looking to recruit a communications and administrative all-rounder to complete a wide range of tasks. The suitable candidate will support RVA’s Communications Manager and Administrative Manager. If you have proven experience in a similar role and are committed to improving the lives of […]
  • National Disability Insurance Agency (NDIA) Community Update
    The National Disability Insurance Agency (NDIA) Co-design and Engagement Team would like to invite you to participate in their monthly virtual community update which is held in all states on the first Wednesday of each month. If you would like to attend, please email: community.engagement.east@ndis.gov.au The aim of this virtual meeting is to provide you with […]
  • 28 June is International Neonatal Screening Day 
    Today (28 June) is International Neonatal Screening Day, a day that celebrates the birthday of Dr Robert Guthrie, the American microbiologist who introduced the first dried bloodspot testing for rare disease. Australian babies have been screened using Dr Guthrie’s method since the 1960s.  Newborn Bloodspot Screening (NBS) is an important program that supports the earliest […]
  • Mental Health First Aid Training for Rare Voices Australia Partner Organisations
    Rare Voices Australia (RVA) is currently working on a mental health and wellbeing project based on recommendations in the National Strategic Action Plan for Rare Diseases (the Action Plan). Thank you to the RVA Partner organisations that have contributed to this project so far. One aim of the project is to build the capacity of […]
  • Queensland Government to Expand Its Newborn Screening Program to Include Spinal Muscular Atrophy (SMA) and Severe Combined Immunodeficiency (SCID)
    Rare Voices Australia (RVA) welcomes the Queensland Government’s announcement that the state will expand its newborn screening program to include Spinal Muscular Atrophy (SMA) and Severe Combined Immunodeficiency (SCID).  The Hon Yvette D’Ath MP, Queensland’s Minister for Health and Ambulance Services, said the new testing capabilities would begin operation in May 2023 and be available […]
  • RVA Education: The Changing Face of Newborn Bloodspot Screening – A Rare Disease Sector Forum
    Ahead of the Federal Election, RVA was excited to welcome the Australian Labor Party’s (ALP) commitment, if elected, to invest in consistent and equitable newborn bloodspot screening (NBS). The ALP forming a majority government presents the rare disease sector with a timely opportunity to revisit the challenges and gaps with NBS that RVA has been […]
  • Rare Disease Registry Audit: Key Findings and Project Update
    The much-awaited key findings from the Australian Rare Disease Registry Audit project, led by Monash University registry experts, Professor Susannah Ahern and Dr Rasa Ruseckaite, are in. Rare Voices Australia (RVA) is overseeing this critical work in recognition of the importance of rare disease registries (RDRs), which is acknowledged in the Australian Government’s National Strategic […]
  • Launched: A Guide for Rare Disease Organisation Leaders in Australia
    Rare disease organisations are an important part of the Australian rare disease community. These organisations can understand, capture and communicate the lived experience of those impacted by a rare condition in a way no one else in the sector can. The rare disease community has specific and essential expertise in living with a rare condition […]
  • RVA is Hiring: Project Officer – Mental Health and Wellbeing (Maternity Leave Position)
    Rare Voices Australia (RVA) is looking to hire a Project Officer – Mental Health and Wellbeing (Maternity Leave Position). The Project Officer – Mental Health and Wellbeing will play a key role in delivering the RArEST (Rare Awareness, Education, Support and Training) Project. The RArEST Project will contribute to the collaborative implementation of the National Strategic Action Plan for […]
  • Victorian Budget 2022-23 Newborn Bloodspot Screening Update
    Today’s Victorian 2022-23 Budget included funding to expand the state’s newborn screening program.  In recognition of Rare Voices Australia’s (RVA) leading role in national newborn bloodspot screening advocacy, Martin Foley MP’s (Minister for Health) office reached out to provide RVA with more detail regarding this announcement.  RVA has been advised that in total, $4.1 million […]
  • Meet Our 2022 Rare Voices Australia Ambassadors!
    In 2022, Rare Voices Australia (RVA) is celebrating 10 years of rare disease advocacy. RVA’s 10th Anniversary Ambassador Program (the Ambassador Program) is one of several initiatives we are unveiling in 2022 to celebrate 10 years of rare disease advocacy. The overarching theme of the Ambassador Program is, Illuminating People Living with a Rare Disease. […]
  • Ataxia-Telangiectasia Clinical Trial Launch
    Rare Voices Australia (RVA) attended the launch of a world-first clinical trial for people living with Ataxia-Telangiectasia (A-T) at Wesley Medical Research in Brisbane with the Hon. Greg Hunt MP, Minister for Health and Aged Care; the clinical trial team led by Dr David Coman and Prof Martin Lavin;  RVA Partner BrAshA-T;  and children living […]
  • RVA Full Statement: Budget 2022-23 and Australians Living with a Rare Disease
    On Tuesday, 29 March 2022, the Hon Josh Frydenberg MP (Treasurer of Australia) announced the Morrison Government’s 2022-23 Federal Budget, which included a record investment in Australia’s health system with a total commitment of $537 billion over the next four years. As the national peak body for Australians living with a rare disease, Rare Voices […]
  • Federal Budget 2022-23 and Australians living with a rare disease
    On Tuesday, 29 March 2022, the Hon Josh Frydenberg MP (Treasurer of Australia) announced the Morrison Government’s 2022-23 Federal Budget, which included a record investment in Australia’s health system with a total commitment of $537 billion over the next four years. As the national peak body for Australians living with a rare disease, Rare Voices […]
  • Rare Voices Australia’s 10th Anniversary Ambassador Program
    In 2022, Rare Voices Australia (RVA) is celebrating 10 years of rare disease advocacy. Thank you to everyone who contributed to RVA’s work over the last decade. From former RVA Board Directors and Scientific and Medical Advisory Committee members to RVA Partners, former staff and all stakeholders, we acknowledge your ongoing support. While much work […]
  • Launched: ‘Rare Metabolic Disease Workforce White Paper: Towards a Strengthened Rare Disease Workforce for Australia’
    This Rare Disease Day (28 February 2022), Rare Voices Australia (RVA) launched the much-anticipated Rare Metabolic Disease Workforce White Paper: Towards a Strengthened Rare Disease Workforce for Australia (White Paper). RVA hosted a webinar to launch the White Paper for those involved in the consultation process. Thank you to the following people who spoke at […]
  • Global Roadmap for Sanfilippo Syndrome Therapies Launched
    Rare Voices Australia (RVA) congratulates RVA Partner, Sanfilippo Children’s Foundation Australia, for their leading role in the development and delivery of a Global Roadmap for Sanfilippo Syndrome Therapies (Roadmap). This Roadmap was a joint effort with Cure Sanfilippo Foundation (USA) and other international sister foundations. It was developed collaboratively through the expertise of clinicians, researchers, […]
  • 2022 Rare Disease Day Update and Media Pack
    Rare Disease Day will be marked on 28 February 2022. As reported in December eNews, Rare Voices Australia (RVA) has been actively contributing to the development of the global Rare Disease Day campaign. The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their […]
  • Expressions of Interest Sought: Rare Awareness, Education, Support and Training Stakeholder Reference Group
    Do you have lived experience of rare disease? Are you actively connected with a rare disease community?Would you like to contribute to an innovative rare disease awareness, education, support and training program designed to improve outcomes for all Australians living with a rare disease?
  • Systemic National Disability Insurance Scheme Advocacy: National Disability Insurance Agency Roundtable
    Rare Voices Australia (RVA) has continued to actively advocate for systemic improvements to the National Disability Insurance Scheme (NDIS), to ensure the program can better respond to the unique needs and challenges of people living with a disability caused by rare disease. Through this sustained and ongoing advocacy, RVA was invited to participate in an […]
  • Board Positions Available: Rare Voices Australia
    Rare Voices Australia (RVA) is seeking non-executive directors to join the RVA Board. Successful applicants will bring experience, skills and capabilities that contribute to the governance of RVA and enhance its advocacy for the best outcomes for Australians living with a rare disease. RVA remains committed to board diversity and inclusion. Specific experience in fundraising […]
  • Update: United Nations General Assembly Resolution on Persons Living with a Rare Disease and their Families
    Throughout 2021, the global rare disease community has been advocating for the United Nations General Assembly (UNGA) to adopt the Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families (Resolution on PLWRD). This campaign has been led at a global level by the NGO Committee for Rare Diseases, Rare […]
  • Introducing RVA’s New Online Education Portal
    Since the launch of the National Strategic Action Plan for Rare Diseases (the Action Plan) in February 2020, Rare Voices Australia’s (RVA) Mentorship and Education Program has focused on Action Plan implementation and specifically, Action 2.1.4: “Develop the capacity of rare disease organisations to represent and advocate for people living with a rare disease and […]
  • The Hon Greg Hunt MP Announces Retirement From Politics
    The Hon Greg Hunt MP has announced that he will retire from politics at the next election after more than 20 years in Federal Parliament. Watch Minister Hunt’s speech to Parliament. Rare Voices Australia (RVA) thanks Minister Hunt for his ongoing support of Australians living with a rare disease during his time as Minister for Health […]
  • Parliamentary Inquiry Position Statement: ‘The New Frontier – Delivering Better Health for All Australians’
    On 25 November 2021, 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. The New Frontier – Delivering better health for all Australians (the New Frontier report) contains 31 […]
  • RVA is Hiring: Resources and Information Officer
    Rare Voices Australia (RVA) is looking for a Resources and Information Officer 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. […]
  • 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 […]
  • 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.