News

In November, Rare Voices Australia (RVA) focused our disability advocacy efforts on the future pricing framework of the National Disability Insurance Scheme (NDIS). This work included extensive consultation with and lodging a Submission to the Independent Health and Aged Care Pricing Authority (IHACPA), which has been tasked with advising the Australian Government on options for… Read more: Rare Disease Disability Advocacy Update – November 2024

Thank you to everyone who joined Rare Voices Australia (RVA) for the 2024 National Rare Disease Summit on 15 and 16 November in Brisbane. The Summit brings together the rare disease sector – thank you all for making this year’s Summit a success (read a selection of the stakeholder feedback received)! We especially thank our… Read more: Highlights: 2024 National Rare Disease Summit

In 2020, Rare Voices Australia (RVA) launched our inaugural RVA Ambassador Program to coincide with our 10th anniversary year. The initiative continued beyond 2020 due to popular demand and has since gone from strength-to-strength. The RVA Ambassador Program provides people living with a rare disease and those with professional experience of working with rare diseases… Read more: Expressions of Interest Sought: 2025-27 Rare Voices Australia Ambassador Program

Rare Voices Australia’s Chief Executive Officer, Nicole Millis, is pleased to accept a consumer role on the newly announced Implementation Advisory Group (IAG) for the Health Technology Assessment (HTA) Review Report following an expression of interest process. The Hon Mark Butler MP, Minister for Health and Aged Care, announced the IAG while delivering a speech… Read more: Announced: Health Technology Assessment Policy and Methods Review Recommendations Implementation Group

The Hon Mark Butler MP’s office has reached out to Rare Voices Australia, Patient Voice Initiative and Lymphoma Australia and asked us to distribute the following message regarding the Consumer Member Selection Criteria for the HTA Policy and Methods Review Recommendations Implementation Group. Message from the Minister’s Office “The Minister for Health and Aged Care,… Read more: Consumer Member Selection Criteria: HTA Policy & Methods Review Recommendations Implementation Group

Rare Voices Australia (RVA) continues our systemic advocacy for the estimated two million Australians living with a rare disease, the majority of whom meet the Australian Government’s definition for disability. RVA estimates that over 100,000 National Disability Insurance Scheme (NDIS) participants live with a rare disease comorbidity. With so much going on in disability reform,… Read more: Rare Disease Disability Advocacy Update: October 2024

Rare Voices Australia (RVA) remains committed to advocating for the estimated two million Australians living with a rare disease, the majority of whom meet the Australian Government’s definition of living with a disability. RVA continues to engage directly with the National Disability Insurance Agency to ensure the needs of NDIS participants with a rare disease-related… Read more: Rare Disease Disability Advocacy Update: September 2024

Rare Voices Australia (RVA) congratulates the Australian Commission on Safety and Quality in Health Care on the revised Australian Framework for National Clinical Quality Registries 2024 (The Framework). RVA is pleased to see the overall simplification of advice in The Framework, particularly across the operating principles, which acknowledge the different settings where clinical quality registries… Read more: The Revised Australian Framework for National Clinical Quality Registries 2024

On 29 August 2024, the Health and Medical Research Office (HMRO), held a public webinar to share updates to the Medical Research Future Fund monitoring, evaluation and learning strategy (the Strategy). The Strategy outlines the framework for assessing the performance of the Medical Research Future Fund (MRFF) to support its continued improvement. The framework is… Read more: Medical Research Future Fund monitoring, evaluation and learning strategy Update

Rare Voices Australia (RVA) welcomes the publication of the Health Technology Assessment (HTA) Policy and Methods Review final report (the HTA Review report), Accelerating Access to the Best Medicines for Australians Now and into the Future. The Hon Ged Kearney MP, Assistant Minister for Health and Aged Care, launched the HTA Review report in Canberra… Read more: Final Reports Published: Health Technology Assessment Policy and Methods Review and Enhanced Consumer Engagement Process

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) remains committed to advocating for people living with a rare disease, including those with disabilities. RVA estimates that 100,000 National Disability Insurance Scheme (NDIS) participants live with a rare disease comorbidity. The August Rare Disease Disability Advocacy Update focuses… Read more: Rare Disease Disability Advocacy Update: August 2024

As the lead consortia member on The Navigator Project, which is funded by the Department of Health and Aged Care, Rare Voices Australia (RVA) is excited to share the first progress update since the project commenced in July 2023. RVA would like to acknowledge our consortia partners, the Sydney Children’s Hospitals Network, the Perth Children’s… Read more: The Navigator Project: Progress Update – August 2024

The Australian Commission on Safety and Quality in Health Care (the Commission) has released the revised Australian Framework for National Clinical Quality Registries (2024). Read more background information and download the revised Australian Framework for National Clinical Quality Registries (2024) on the Commission’s website. Australia’s national Clinical Quality Registries collect, analyse and report information about… Read more: Revised Australian Framework for National Clinical Quality Registries (2024) Released

Rare Voices Australia’s (RVA) Education and Advocacy Manager, Louise Healy, and Research and Evaluation Manager, Dr Falak Helwani, were delighted to attend the Human Genetics Society of Australasia’s (HGSA) 47th Annual Scientific Meeting between 10 and 13 August 2024. The theme of the meeting was, Beyond Next Generation: The Future of Genomics. At the meeting,… Read more: Rare Voices Australia Recap: Human Genetics Society of Australasia’s 47th Annual Scientific Meeting

Rare Diseases International (RDI) is working with its members, including Rare Voices Australia (RVA), to call for a World Health Assembly (WHA) Resolution on Rare Diseases to request the development of a Global Action Plan on Rare Diseases. The Global Action Plan on Rare Diseases will assist in ensuring Universal Health Coverage means ‘health for… Read more: Australia and the World Health Assembly Resolution on Rare Diseases

Rare Voices Australia, with support from Western Australia’s (WA) Office of Population Health Genomics (OPHG), has progressed aspects of the Australian Government’s National Strategic Action Plan for Rare Diseases with a focus on mental health and wellbeing. Two Mental Health and Rare Disease fact sheets, customised for WA, are available to download. Please feel free… Read more: New Mental Health and Rare Disease Resources for Western Australian Consumers and Health Professionals

On 28 June 2024, Rare Voices Australia (RVA) was invited to a public hearing to present to the Joint Standing Committee on the National Disability Insurance Scheme (the Committee) regarding their Inquiry into the participant experience of people living in rural, regional and remote areas. This invitation was based on the strength of RVA’s submission… Read more: Public Hearing: Joint Standing Committee on the National Disability Insurance Scheme – Participant Experience in Rural, Regional and Remote Australia

Newborn bloodspot screening (NBS) is an important program that supports the earliest possible diagnosis of some rare diseases. Rare Voices Australia (RVA), alongside other rare disease stakeholders, including RVA Partner groups/organisations, have called for increased equity, timeliness and consistency of screening for several years. While there is more work to do, the Commonwealth’s investment and… Read more: Newborn Bloodspot Screening Update: July 2024

In May 2024, the Hon Mark Butler MP, Minister for Health and Aged Care, announced the Australian Government’s commitment to developing a National Health and Medical Research Strategy (the Strategy). Read the media release. The aim of the Strategy is to help target funding and strengthen Australia’s world-leading health and medical research capabilities into the… Read more: Launched: Department of Health and Aged Care’s Australian Health and Medical Research Workforce Survey

June has been a busy month for Rare Voices Australia (RVA) in the disability space with engagement with government on several of the key disability reform initiatives currently underway. As noted in RVA’s March Disability Advocacy Update, a comprehensive disability reform agenda is underway across Commonwealth and State Governments. RVA is particularly pleased that we… Read more: June 2024 Disability Advocacy Update

The National Health and Medical Research Council (NHMRC) is currently reviewing the Statement on Consumer and Community Involvement in Health and Medical Research 2016 (Consumer Statement). The aim of the Consumer Statement is to guide research institutions, researchers, consumers and community members regarding the active involvement of consumers and community members in all aspects of… Read more: Update: Review of the National Health and Medical Research Council Statement on Consumer and Community Involvement in Health and Medical Research

To better understand Australian newborn bloodspot screening (NBS) programs, the Department of Health and Aged Care commissioned a readiness assessment led by an external consultant. As published in the Newborn bloodspot screening expansion – Readiness assessment executive summary (the executive summary), “The aim of the readiness assessment was to understand how NBS programs operate nationally… Read more: Department of Health and Aged Care Publishes Its ‘Newborn bloodspot screening expansion – Readiness assessment executive summary’

As noted in Rare Voices Australia’s (RVA) March 2024 Disability Advocacy Update, a comprehensive disability reform agenda is underway across Commonwealth and State Governments. As the national peak body for Australians living with a rare disease, RVA continues to advocate for the best outcomes for the estimated two million Australians living with a rare disease, including those… Read more: May 2024 Disability Advocacy Update

Rare Voices Australia (RVA) is preparing for our annual Strategy Review session in July where, as an organisation, we discuss our focus areas and priorities for the future. RVA is asking all stakeholders in the rare disease sector for their input ahead of our Strategy Review meeting. Your responses will be considered and assist in… Read more: Rare Voices Australia Stakeholder Survey

Last night (Tuesday, 14 May), the Hon Dr Jim Chalmers MP (Treasurer of Australia) handed down the Albanese Government’s 2024-2025 Federal Budget. Reviewing the Federal Budget to identify any relevant measures for the rare disease sector has taken some time – there is some good news but work is still needed in some areas. Rare… Read more: Updated: 2024-2025 Federal Budget and Australians living with a rare disease

On Tuesday 16 April, Rare Voices Australia (RVA) convened a virtual roundtable to explore two important areas of proposed changes to the National Disability Insurance Scheme (NDIS): On 27 March 2024, the Hon Bill Shorten MP tabled draft legislation, the NDIS Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 (the Bill) to… Read more: April 2024 Disability Advocacy Update

Rare Voices Australia (RVA) is the national peak body for the estimated two million Australians living with a rare disease. RVA provides a strong, unified voice to advocate for policy as well as health, disability and other systems that work for Australians living with a rare disease. The organisation’s person-centred focus sees RVA working with… Read more: Rare Voices Australia Board Recruitment

A comprehensive disability reform agenda is underway across Commonwealth and State Governments, including transformation of disability policy, which is being led by the Disability Reform Ministerial Council (DRMC). This program of disability reform is guided by the commitments of the Australian Disability Strategy 2021-2031 (December 2021) and its supporting action plans, and has been instigated… Read more: Rare Voices Australia Disability Advocacy Update: March 2024

Rare Voices Australia (RVA) thanks everyone who attended our 2024 Rare Disease Day Parliamentary Event in Canberra on the rarest day of the year (29 February). Hosted by the Parliamentary Friends of Rare Diseases, the event theme was Progress Beyond Policy. Read the speech delivered by RVA’s Chief Executive Officer, Nicole Millis. Guests also heard… Read more: Highlights: 2024 Rare Voices Australia Rare Disease Day Parliamentary Event

Rare Disease Day is the globally coordinated movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. The campaign is organised globally by EURORDIS – Rare Diseases Europe, Rare Diseases International and 68 national alliances. Rare Voices Australia (RVA) is the… Read more: 2024 Rare Disease Day Media Pack

The Joint Standing Committee on the National Disability Insurance Scheme (NDIS) has initiated a new inquiry into the NDIS participant experience in rural, regional and remote Australia. Read the terms of reference for the inquiry on the Joint Standing Committee on the NDIS’ website. People living in regional, rural and remote areas are identified as… Read more: Joint Standing Committee on the National Disability Insurance Scheme – Participant Experience in Rural, Regional and Remote Australia

As part of Medicine Australia’s five-year Strategic Agreement with the Federal Government, an independent review of Australia’s health technology assessment (HTA) system is being undertaken – the first of its kind in nearly 30 years. HTA reform will ensure that Australia’s HTA system evolves to keep pace with advancements in medical technologies and delivers faster… Read more: Health Technology Assessment Policy and Methods Review: Consultation 2 Commences

Rare Voices Australia (RVA) is pleased to partner with Tuberous Sclerosis Australia (TSA), Mito Foundation and Crohn’s & Colitis Australia to implement the third component of The Navigator Project: Engagement with three consumer-led rare and complex disease organisations RVA congratulates the successful organisations and we look forward to working with you! We thank every organisation… Read more: Update: Engagement with Three Consumer-Led Rare and Complex Disease Organisations – The Navigator Project

On 30 November, the Australian Government published its response to The New Frontier – Delivering better health for all Australians report (the New Frontier report) tabled by the Standing Committee on Health, Aged Care and Sport on 25 November 2021. The New Frontier report responded to the Parliamentary Inquiry into approval processes for new drugs… Read more: RVA Position Statement: ‘Government response – The New Frontier: Inquiry into approval processes for new drugs and novel medical technologies in Australia’

This year saw the culmination of several substantial reviews of the disability landscape across Australia exploring the lived experience of people with disability and how the many systems, policies and government departments that support this sector need to transform to better meet the needs of people with a disability. As of December 2023, there are… Read more: Disability Advocacy Review: December 2023

In November 2023, Assistant Treasurer, the Hon Stephen Jones MP, announced a national consultation on the issue of genetic discrimination by life insurers (the Consultation). Genetic discrimination has been the subject of significate debate in recent years due to concerns that people may decline genetic testing for fear that it could impact their access to… Read more: New Government Consultation on the Use of Genetic Testing Results in Life Insurance Underwriting

Rare Voices Australia’s (RVA) role in identifying evidence gaps and proactively partnering with researchers and other experts to address unmet areas of need in research continued growing throughout 2023. Our research work aligns with the priorities, actions and implementation steps in the Research and Data Pillar of the Australian Government’s National Strategic Action Plan for… Read more: Rare Voices Australia and Research: 2023 in Review

On 6 December 2023, the Involve Australia project, coordinated by Australian Genomics, launched Guidelines for Community Involvement in Genomic Research (Guidelines). Involve Australia has engaged with the public to develop community involvement guidelines for genomic researchers. The Guidelines were developed in partnership with patient support and advocacy groups, Indigenous community members, patients and carers, interested members… Read more: Launched: Involve Australia’s Guidelines for Community Involvement in Genomic Research

To assist with implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases, Rare Voices Australia (RVA) received $1 million over three years from 1 July 2021 to 30 June 2024 to lead the collaborative development of the Rare Awareness Rare Education (RARE) Portal and other education activities. In addition to facilitating the… Read more: New Education Materials for the Aboriginal and Torres Strait Islander, Multicultural and Regional, Remote and Rural Communities

On 10 November 2023, Health Ministers from all Australian governments met to discuss a range of important issues for Australia’s healthcare system. The purpose of these Health Ministers’ Meetings is to provide leadership and facilitate joint decision making on health issues of national importance. As the national peak body for Australians living with a rare… Read more: November Health Ministers’ Meeting and Newborn Bloodspot Screening

Rare Voices Australia (RVA) thanks everyone who attended our inaugural Queensland Parliamentary Event dedicated to people living with a rare disease. This drop-in event provided RVA Partner group/organisation leaders with the chance to interact directly with parliamentarians who stopped by to meet RVA and others who represent people living with a rare disease. As the… Read more: Recap: Inaugural Queensland Parliamentary Event

Several Medical Research Future Fund (MRFF) research grant opportunities have recently opened that are relevant to rare disease. The opportunities are listed below. Medical Research Future Fund Clinical Trials Activity Grant Opportunity In this new round, the Health and Medical Research Office has recognised the need to fund novel clinical trial designs, including n of 1… Read more: New Medical Research Future Fund (MRFF) Grant Opportunities Relevant to Rare Disease

Rare Voices Australia (RVA) invites leaders of RVA Partner groups/organisations to attend a webinar on Wednesday, 22 November 2023 from 12pm to 1:30pm (AEDT) about a new flagship research study on preferences for genomic testing. As the national peak body for Australians living with a rare disease, RVA is working in partnership with researchers, decision-makers,… Read more: Rare Voices Australia Partner Opportunity: Webinar – New Flagship Study on Preferences for Genomic Testing

Rare Voices Australia (RVA) invites Queensland-based leaders of RVA Partner groups/organisations to the first-ever Queensland Parliamentary Event dedicated to people living with a rare disease. This invite-only, drop-in event gives RVA Partner group/organisation leaders the opportunity to interact directly with parliamentarians who stop by over a one-hour period to meet RVA and others who represent… Read more: Inaugural Queensland Parliamentary Event

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) welcomes the recent announcements from the Department of Health and Aged Care regarding conditions to be added to, or evaluated for, newborn bloodspot screening (NBS) panels. We acknowledge the RVA Partner groups/organisations and their communities that have persistently pursued… Read more: Newborn Bloodspot Screening Update – October 2023

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: Rare Voices Australia Is Hiring: Web Developer

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 Statement: Aboriginal and Torres Strait Islander Voice to Parliament

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 Is Hiring: Project Manager – The Navigator Project (Rare and Complex Disease Telehealth Nurse Program)

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 Is Hiring: RARE Helpline Manager

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: Rare Voices Australia Is Hiring: Communications and Information Officer

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: National Disability Insurance Scheme (NDIS) Advocacy Update: August 2023

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: Call for Expressions of Interest: Engagement with Three Consumer-Led Rare and Complex Disease Organisations

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: Evaluation of the Medical Research Future Fund Clinical Trials Activity Final Report

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: Rare Voices Australia’s Submission on the Future Governance and Administration of Australian Health and Medical Research Funding

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: Medical Research Future Fund (MRFF) Grant Success for Rare Disease

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: Louise Healy, RVA’s Education and Advocacy Manager, Appointed to Expert Advisory Group on Genomics Australia

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: Launched: Recommendations for a National Approach to Rare Disease Data

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: Genetic Services of Western Australia Survey: Closes 1 September 2023

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 Leads Successful Medical Services Advisory Committee Application Working In Collaboration With Tuberous Sclerosis Australia

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: Rare Voices Australia Partners With Sydney Local Health District to Better Support Australians Living With a Rare Disease

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: New Rare Disease Project ECHO® Workshop Sessions for Health Professionals

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: RVA Education: Applying Mental Health First Aid in a Rare Disease Context

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: ‘Hope in Clinical Trials: Advancing Research for Rare Diseases’: Parliamentary Friends of People with Rare and Undiagnosed Diseases – Western Australia

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: RVA Education: Facebook Groups and Social Media Risk Training for Rare Disease Organisations

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: RVA Education Webinar – ‘Expanding Newborn Bloodspot Screening: Progress Made and Next Steps’

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: Grant Update: Rare and Complex Disease Telehealth Nurse Program

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: 2023 Status Report: Implementing the National Strategic Action Plan for Rare Diseases

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: Rare Voices Australia Statement: 2023-24 Federal Budget

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: Health Technology Assessment Policy and Methods Review: Rare Disease Sector Webinar

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: Public Consultation 1 Commences: Health Technology Assessment (HTA) Policy and Methods Review

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: Published: Principles for consumer involvement in research funded by the Medical Research Future Fund (MRFF) – March 2023

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: Launched: ‘National Strategy for Australia’s Rare Metabolic Disease Workforce’

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: Launched: Rare Awareness Rare Education (RARE) Portal

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: Rare Voices Australia Is Hiring: Communications and Engagement Officer

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: Terms of Reference Published: Health Technology Assessment Policy and Methods Review

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: Recap: 2023 Rare Disease Day

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 Voices Australia 2023 Rare Disease Day Parliamentary Event

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: National Disability Insurance Scheme (NDIS) Advocacy Update: February 2023

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: 2023 Rare Disease Day Parliamentary Event: Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia

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: 2023 Rare Disease Day Media Pack

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: RVA Partner Opportunity: Aboriginal and Torres Strait Islander Mental Health First Aid Training

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: RVA Partner Opportunity: Youth Mental Health First Aid Training

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: 2023 Sawatzky Cup Raises Over $11,000 for Rare Voices Australia and Australians Living With a Rare Disease

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: Congratulations to Rare Voices Australia Scientific and Medical Advisory Committee Member Associate Professor Paul Lacaze!

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: Rare Voices Australia Congratulates Childhood Dementia Initiative on the Recent Launch of the Childhood Dementia Knowledgebase!

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: Expressions of Interest: Consumer Representatives With Lived Experience of a Genetic Condition and/or the Genetic Services of Western Australia

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: Refreshed National Medicines Policy (NMP) Delivered to the Australian Government

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: Reflections From the 2022 Annual Scientific Meeting for the Human Genetics Society of Australasia (HGSA)

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: Recap: 2022 National Rare Disease Summit

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: RVA Education: Expansion of Newborn Bloodspot Screening Public Consultation

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: First Ever Global Consensus Clinical Care Guidelines for Sanfilippo Syndrome

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 Statement: Budget October 2022-23

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: Parliamentary Event: Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia

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: Sector-Wide Activity Scan: National Strategic Action Plan for Rare Diseases Implementation

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: Rare Voices Australia Parliamentary Event – 5 September 2022

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: RVA Welcomes Equity of Access for Australians Living with Phenylketonuria (PKU)

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: National Medicines Policy Review Resumes

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: Webinar for Health Consumers and Consumer Advocates with the Hon Mark Butler MP: Consumers Health Forum of Australia 

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: RVA Welcomes Announcement That Pharmaceutical Benefits Scheme Listed Treatment for Spinal Muscular Atrophy (SMA) Will Be Extended to Adults

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: RVA Partner Organisations: November Mental Health First Aid Training Accreditation