News

Rare Voices Australia (RVA) is seeking a talented web developer with experience in user interface (UI)/user experience (UX) design to join our growing team. As a web developer, you will help to shape, grow and maximise RVA’s evolving online presence. You’ll be required to assist with designing, coding and modifying our existing websites, while ensuring … Read more

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is dedicated to driving the best outcomes for Australians living with a rare disease, including Aboriginal and Torres Strait Islander peoples. Aboriginal and Torres Strait Islander peoples were identified as a priority population in the Australian Government’s National Strategic … Read more

Rare Voices Australia (RVA) is looking to recruit a Project Manager for The Navigator Project (Rare and Complex Disease Telehealth Nurse Program). The suitable candidate will have a range of responsibilities, including being responsible for project management, project reporting and overseeing project deliverables for The Navigator Project. If you have proven experience in a similar … Read more

Rare Voices Australia (RVA) is looking to recruit a RARE Helpline Manager. The suitable candidate will have a range of responsibilities, including managing and supervising the day-to-day operations of the newly established RARE Helpline. If you have proven experience in a similar role and are committed to improving the lives of Australians living with a … Read more

Rare Voices Australia (RVA) is looking to recruit a Communications and Information Officer. The suitable candidate will have a range of responsibilities, including supporting RVA’s Communications Manager and our small Rare Awareness Rare Education (RARE) Portal team across various communications and engagement tasks. If you have proven experience in a similar role and are committed … Read more

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is continuing our National Disability Insurance Scheme (NDIS) advocacy to address systemic issues and gaps for people living with a rare disease who are also NDIS applicants or participants. RVA is recognised by the National Disability Insurance Agency (NDIA) … Read more

Rare Voices Australia (RVA) is progressing work on The Navigator Project, which was named the recipient of the Rare and Complex Disease Telehealth Nurse Program grant. Read the Australian Government’s media release. The Navigator Project will support the estimated two million Australians living with a rare disease to navigate the health system, including via the … Read more

The Health and Medical Research Office’s (HMRO) Performance and Evaluation Section within the Department of Health and Aged Care (the Department) recently asked Rare Voices Australia (RVA) to share their final report on the evaluation of the Medical Research Future Fund Clinical Trials Activity (MRFF-CTA) grant opportunity (Evaluation Report) with the rare disease sector. The … Read more

Combined, the National Health and Medical Research Council’s Medical Research Endowment Fund (MREA) and the Medical Research Future Fund (MRFF) award approximately $1.5 billion in health and medical research grants every year. The National Health and Medical Research Council (NHMRC) typically funds investigator-led (that is, led by a researcher or researchers) grants focused on fundamental … Read more

One of Rare Voices Australia’s (RVA) formal research partnerships was chosen for funding under the Medical Research Future Fund (MRFF) Preventive and Public Health Research Initiative 2022 Assessment of High-Cost Gene Treatments and Digital Health Interventions Grant Opportunity. RVA congratulates lead researcher Professor Kirsten Howard, from the University of Sydney, and the incredible team of researchers and other … Read more

The Department of Health and Aged Care has announced the Expert Advisory Group (EAG) on Genomics Australia, a new national genomics body. Congratulations to Louise Healy, Rare Voices Australia’s Education and Advocacy Manager, who has been appointed to the EAG as a consumer advocate. Louise has extensive experience as a health consumer representative and brings … Read more

Rare Voices Australia (RVA) and Monash University have published Recommendations for a National Approach to Rare Disease Data: Findings from an Audit of Australian Rare Disease Registries. The report includes the findings from the Australian Rare Disease Registry Audit project, led by Monash University registry experts, Professor Susannah Ahern and Dr Rasa Ruseckaite. Importantly, it … Read more

The Government of Western Australia Department of Health and the Genetic Services of Western Australia (GSWA) invite people to participate in a project to plan the future of genetic service delivery by GSWA. GSWA provides genetic counselling, genetic testing, and family planning support for people impacted by certain genetic conditions. GSWA is in the process … Read more

The Medical Services Advisory Committee (MSAC) has published the successful outcome of Application No. 1702 – Abdominal MRI for rare genetic conditions associated with increased risk of renal tumours. This will result in abdominal magnetic resonance imaging (MRI) scans being bulk billed for people living with tuberous sclerosis complex (TSC). Access to bulk billing for … Read more

Rare Voices Australia (RVA) is pleased to partner with the Sydney Local Health District (SLHD) to better support the estimated two million Australians living with a rare disease. With a health-service driven action strategy and Leadership Committee, the partnership aims to provide a new focus and hope for Australians living with rare conditions. As part … Read more

By popular demand, five additional Project ECHO® workshop sessions for health professionals have been announced. See the updated schedule and register to attend here. Each session will cover a key skill for caring for people living with a rare disease. They will have an enhanced format that allows more time for practical case studies and … Read more

In 2022, Rare Voices Australia (RVA) partnered with Mental Health First Aid (MHFA) Australia to commence work on a mental health and wellbeing project, based on recommendations in the Australian Government’s National Strategic Action Plan for Rare Diseases. Go to this article on RVA’s website for more information. RVA has continued this work in 2023 … Read more

Rare Voices Australia (RVA) was pleased to contribute to a Parliamentary Event on 19 May hosted by the Parliamentary Friends of People with Rare and Undiagnosed Diseases (Parliamentary Friends Group) in Western Australia (WA), in collaboration with the Rare Care Clinical Centre of Expertise for Rare and Undiagnosed Diseases. The event, Hope in Clinical Trials: … Read more

Social media can be a powerful tool for rare disease groups/organisations. It gives small, geographically dispersed rare disease communities cost-effective ways to connect, share stories and information, and access practical and social support. If you answered yes to any of the above questions, Quiip’s Facebook Groups and Social Media Risk Training for Rare Disease Organisations … Read more

On 13 June 2023, the Department of Health and Aged Care updated its website to state they are “working with states and territories to expand Australia’s NBS programs, and make sure all babies born have access to the same screening.” This milestone agreement ensures timely and consistent screening and wrap around care. Read the media … Read more

Rare Voices Australia (RVA) is pleased to be the lead consortium partner on The Navigator Project, which has been named the recipient of the Rare and Complex Disease Telehealth Nurse Program grant. Read the Australian Government’s media release. The funding of up to $2.48 million will support the estimated two million Australians living with a … Read more

The Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan), launched in 2020, is the first nationally coordinated effort to address rare diseases in Australia.1 As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is leading the collaborative implementation of the Action Plan. Between September … Read more

On Tuesday 9 May, the Hon Dr Jim Chalmers MP (Treasurer of Australia) delivered the Albanese Government’s 2023-24 Federal Budget. Overall Australian Government spending on health, aged care and sport in 2023-24 is $137.6 billion. As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) attended the Department of … Read more

Equitable access to health technology is a key priority of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan). Rare Voices Australia (RVA) and the rare disease sector have been actively advocating for reform that makes health technology assessment (HTA) for rare disease therapies more fit-for-purpose. Most recently, as the national peak body … Read more

The Department of Health and Aged Care has advised that the first round of public consultation for the Health Technology Assessment (HTA) Policy and Methods Review (the HTA Review) is now open. Consultation 1 focuses on the objectives of the HTA Review set out in the Terms of Reference. Submissions are open until 6 June … Read more

In March, the Australian Government Department of Health and Aged Care published Principles for consumer involvement in research funded by the Medical Research Future Fund (the Principles). To achieve the best quality, outcomes and value for money in Medical Research Future Fund (MRFF) funded research, the Principles mention consumers should be involved: Click here to … Read more

One year on from the launch of the Rare Metabolic Disease Workforce White Paper: Towards a Strengthened Rare Disease Workforce for Australia (White Paper)1, Rare Voices Australia (RVA) has launched the National Strategy for Australia’s Rare Metabolic Diseases Workforce (Strategy).2 The Strategy is an evidence-based, expert-backed framework of goals, recommendations and priority actions that address … Read more

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is leading the collaborative development of the Rare Awareness Rare Education (RARE) Portal for rare diseases. The RARE Portal is one of the key deliverables of the Australian Government’s National Strategic Action Plan for Rare Diseases, the first nationally … Read more

Rare Voices Australia (RVA) is looking to recruit a Communications and Engagement Officer. The suitable candidate will have a range of responsibilities, including supporting RVA’s Communications Manager and other staff across various communications and engagement tasks. If you have proven experience in a similar role and are committed to improving the lives of Australians living … Read more

The Australian Government Department of Health and Aged Care has published the terms of reference (TOR) for the Health Technology Assessment (HTA) Policy and Methods Review (the HTA Review). Read the TOR. Rare Voices Australia (RVA) was pleased to contribute to the TOR consultation as the national peak body for Australians living with a rare … Read more

Thank you to everyone for your support of 2023 Rare Disease Day (28 February) and the estimated two million Australians living with a rare disease. Several Rare Disease Day themed events organised by our Rare Voices Australia (RVA) Partner organisations (rare disease groups) and other stakeholders took place to mark the day. It is wonderful … Read more

Rare Voices Australia (RVA) thanks everyone who attended our Rare Disease Day Parliamentary Event in Canberra on 8 March 2023 hosted by Dr Mike Freelander MP (Chair, Standing Committee on Health, Aged Care and Sport and Co-Chair, Parliamentary Friends of Rare Diseases). The event theme was, Ensuring Equity for Australians Living With a Rare Disease. … Read more

Rare disease appropriate National Disability Insurance Scheme (NDIS) supports and planning are an ongoing focus of Rare Voices Australia’s (RVA) advocacy. RVA has been working alongside several RVA Partner organisations (rare disease groups) that have experience and expertise with the NDIS to address systemic issues and gaps for people living with a rare disease who … Read more

Rare Voices Australia (RVA) was pleased to attend a Rare Disease Day Parliamentary Event on 21 February hosted by the Parliamentary Friends of People with Rare and Undiagnosed Diseases (Parliamentary Friends Group) in Western Australia. RVA’s Chief Executive Officer, Nicole Millis; Director, Kane Blackman; Scientific and Medical Advisory Committee member, Clin/Prof Gareth Baynam; Education Project … Read more

Rare Disease Day occurs on the last day of February annually. In 2023, Rare Disease Day will be marked on Tuesday 28 February. Rare Voices Australia (RVA) will be organising our annual Rare Disease Day Parliamentary Event on Wednesday, 8 March 2023. This event is invite-only to maintain stakeholder balance.   Rare Disease Day is … Read more

Rare Voices Australia (RVA) is pleased to continue our work in 2023 with Mental Health First Aid (MHFA) Australia to offer a small number of RVA Partner organisation representatives the opportunity to participate in Aboriginal and Torres Strait Islander MHFA training. RVA is also offering Youth MHFA training opportunities in 2023. This work is a … Read more

Rare Voices Australia (RVA) is pleased to continue our work in 2023 with Mental Health First Aid (MHFA) Australia to offer RVA Partner organisation representatives the opportunity to participate in Youth MHFA training and Aboriginal and Torres Strait Islander MHFA training. This work is a continuation of the mental health and wellbeing project that RVA … Read more

On behalf of Rare Voices Australia (RVA) and the estimated two million Australians living with a rare disease, thank you to everyone who made the 2023 Sawatzky Cup tennis tournament possible on 22 January 2023. Over $11,000 has been raised with all proceeds going to RVA. These funds will help RVA continue overseeing the collaborative … Read more

Associate Professor Paul Lacaze, Head of Public Health and Genomics at Monash University, and member of Rare Voices Australia’s Scientific and Medical Advisory Committee (SMAC), was recently awarded $3 million through the Medical Research Futures Fund – Genomics Health Futures Mission. His research, a DNA Screen national pilot study, has received national media attention, with … Read more

Rare Voices Australia (RVA) Partner, Childhood Dementia Initiative (CDI), recently launched the Childhood Dementia Knowledgebase (the Knowledgebase)—a growing collection of rich data about the 100+ conditions that cause childhood dementia. The Knowledgebase is a relational database providing key information, including incidence, prevalence, life expectancy, age of onset and diagnosis, genetic cause, signs and symptoms and … Read more

Western Australia’s (WA) Department of Health recently released the WA Genomics Strategy 2022-2032 (the Genomics Strategy), which outlines a co-ordinated approach to translate genomics and enable precision medicine and precision public health for WA’s health system. As part of the implementation of the Genomics Strategy, the WA Department of Health is seeking expressions of interest … Read more

The Hon Mark Butler MP, Minister for Health and Aged Care, has announced the updated National Medicines Policy (NMP). The refreshed NMP is available on the Department of Health and Aged Care’s website. RVA is currently reviewing the refreshed NMP in detail and what it may mean for Australians living with a rare disease. As … Read more

Held from 24-27 November 2022, the 45th Annual Scientific Meeting for the Human Genetics Society of Australasia (HGSA) attracted delegates representing various stakeholder groups from across Australia and around the world. The theme, Life Languages: Ancient Stories, New Conversations emphasised recent developments in genetics and genomics, with a diverse range of exceptional speakers. Plenary sessions and … Read more

Thank you to everyone who joined us in-person and virtually at Rare Voices Australia’s (RVA) 2022 National Rare Disease Summit (the Summit) on 11 and 12 November. This was RVA’s first face-to-face Summit since 2018 due to COVID-19. The theme was, From Vision to Action: Celebrating 10 Years of Rare Disease Advocacy and Shaping the … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 activity scan of … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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. … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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, … Read more

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 … Read more

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?

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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. … Read more

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 … Read more

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 … Read more

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. … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

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 … Read more

‘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 … Read more

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 … Read more

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 … Read more

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 … Read more

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. … Read more