News

Rare Voices Australia (RVA) welcomes the release of Australia’s first National Health and Medical Research Strategy 2026–2036 (the Strategy), a landmark step towards a more coordinated, equitable and impact-focused health and medical research system. We congratulate Rosemary Huxtable AO PSM and the broader Strategy development team for their work in shaping the Strategy. As the… Read more: Australia’s First National Health and Medical Research Strategy Released

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) has lodged a submission to the Senate Community Affairs Legislation Committee Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 (the Bill). RVA supports measures that strengthen the integrity and long-term sustainability… Read more: RVA Submission: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

The nationally codesigned Rare Disease Disability Toolkit (the Toolkit): Rare Voices Australia (RVA) continues to promote the first round of Toolkit resources released in March 2026, which include: ‘Navigating Air Travel with Rare Disease Disability’ and the Upcoming Australian Air Passenger Travel Guide The Australian Government is implementing reforms to better protect the rights of… Read more: How the ‘Navigating Air Travel with Rare Disease Disability’ Toolkit Resource Is Making a Difference

The first Australian Rare Disease Research Network (ARDRN) virtual meeting for 2026 was held in May. The ARDRN has grown to over 120 members, including rare disease researchers from a range of jurisdictions, disciplines and career stages. Importantly, there are members with research policy expertise, including representatives from Genomics Australia and Research Australia. Rare Voices… Read more: Update: Australian Rare Disease Research Network Meeting – May 2026

The National Health and Medical Research Council (NHMRC) and the Consumers Health Forum of Australia (CHF) have released the new Statement on Consumer and Community Involvement in Health and Medical Research (the Statement). The NHMRC shared that, “The Statement highlights that consumer and community involvement is essential for high quality health and medical research. It is intended to guide everyone… Read more: Published: NHMRC Statement on Consumer and Community Involvement in Health and Medical Research

On Tuesday, 12 May 2026, the Hon Dr Jim Chalmers MP delivered the Albanese Government’s 2026-27 Federal Budget (the Budget). Rare Voices Australia (RVA) has been reviewing the Budget’s impacts on the rare disease sector. Additionally, we have met with the Hon Mark Butler MP’s office to seek further clarification and provide initial feedback.  … Read more: Federal Budget 2026-27 and Australians Living with a Rare Disease

Below are the updates for the Rare Disease Disability Project for April 2026.  Stakeholder Reference Group Stakeholder Reference Group (SRG) members met for the second time this year in April. The SRG continues to provide lived-experience guidance for the Rare Disease Disability Project (the Project), co-design support for RVA Partner Projects and review of the… Read more: Rare Disease Disability Project News: April 2026

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) acknowledges the Australian Government’s intent to strengthen the integrity and long-term sustainability of the National Disability Insurance Scheme (NDIS). On 22/4/2026, the Hon Mark Butler MP, Minister for Disability and the NDIS and the Minister for Health and Ageing,… Read more: National Disability Insurance Scheme Reset Must Safeguard People with Rare Disease Disability

In December 2025, the Department of Health, Disability and Ageing (the Department) commenced public consultation on the evaluation of the Medical Research Future Fund (MRFF) Research Missions Program. Findings from the evaluation will inform a public report and guide future program direction and investment. Rare Voices Australia (RVA) is concerned that the newly announced round… Read more: Medical Research Future Fund (MRFF) – Missions Program Evaluation

Rare Voices Australia (RVA) continues to advocate for Australians living with rare disease disability through engagement in key disability reform initiatives.  You can read about the Rare Disease Disability Project at RVA’s website. We are proudly delivering projects for the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS). Disability Representative and Carers Organisation… Read more: Rare Disease Disability Advocacy Update: January – March 2026

In February 2026, the World Economic Forum published a seminal white paper entitled, Making Rare Diseases Count: How Better Data Can Unlock a Multitrillion-Dollar Opportunity (White Paper). The White Paper outlines a practical roadmap for improving how data is collected, shared and analysed, and provides policy-ready guidance to help governments, healthcare leaders, employers, investors, payers… Read more: World Economic Forum Report: Making Rare Diseases Count: How Better Data Can Unlock a Multitrillion-Dollar Opportunity

The European Organisation for Rare Diseases (EURORDIS – Rare Diseases Europe) is a unique, non-profit alliance of over 1,000 rare disease consumer organisations from 77 countries, including Australia that work together to improve the lives of over 30 million people living with a rare disease in Europe. Recently, EURORDIS shared factsheets with Rare Voices Australia… Read more: EURORDIS – Rare Barometer Australian Factsheets

In December 2025, Health Ministers met in Brisbane to discuss several priority areas for health system reform. As published in the follow-up Communique, Health Ministers agreed to screen female babies for X-linked adrenoleukodystrophy (X-ALD) within Australia’s newborn bloodspot screening (NBS) programs. In December 2024, Health Ministers supported adding X-ALD to NBS programs to screen male… Read more: Newborn Bloodspot Screening Update: X-Linked Adrenoleukodystrophy (X-ALD)

Below are the updates for the Rare Disease Disability Project for March 2026.  Rare Disease Disability Toolkit The first round of resources for the Rare Disease Disability Toolkit (the Toolkit) were launched at the Rare Disease Day Parliamentary event on 2 March 2026. Toolkit development was codesigned with people living with rare disease disability and… Read more: Rare Disease Disability Project News: March 2026

Research Australia, in collaboration with the National Centre for Epidemiology and Population Health at the Australian National University (ANU), has launched Australia’s first national recognition framework to support the consistent and equitable recognition of consumer contributions to health and medical research. The framework includes guidance on remuneration as well as non-financial forms of recognition. As… Read more: New Framework Launches: ‘Recognising Consumers’ Contributions to Health Research’

Thank you to everyone who attended Rare Voices Australia’s (RVA) Rare Disease Day Parliamentary Event on 2 March 2026. Hosted by the Parliamentary Friends of Australians Living with a Rare Disease, a key aim of Rare Disease Day is to raise awareness among policymakers. The event theme was Equity for People Living with a Rare… Read more: Highlights: 2026 Rare Disease Day Parliamentary Event

Below are the updates for the Rare Disease Disability Project for February 2026.  Rare Disease Disability Toolkit The first round of resources for the nationally co-designed Rare Disease Disability Toolkit (the Toolkit) will be launched at the Rare Disease Day Federal Parliamentary Event in Canberra on 2 March 2026. The resources will be available on… Read more: Rare Disease Disability Project News: February 2026

Rare Disease Day is marked on the last day of February annually. In 2026, Rare Disease Day falls on Saturday 28 February. Rare Disease Day is the globally coordinated movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis for people living with a rare disease. Rare Voices Australia (RVA)… Read more: 2026 Rare Disease Day Landmark Illuminations

Below are the updates for the Rare Disease Disability Project for January 2026.  Virtual Kitchen Table Peer Support Sessions The next Virtual Kitchen Table Peer Support Sessions will be held on Wednesday, 11 March 2026. These sessions are open to people: One session will be held for people living with rare disease disability and a separate session will be… Read more: Rare Disease Disability Project News: January 2026

In 2024 and 2025, Rare Voices Australia (RVA) contributed to the review of the 2016 Statement on Consumer and Community Involvement in Health and Medical Research (the 2016 Consumer Statement). The review was led by the National Health and Medical Research Council (NHMRC) in partnership with the Consumers Health Forum of Australia (CHF). Additional information… Read more: Published: Consultation Report for the Review of the 2016 Statement on Consumer and Community Involvement in Health and Medical Research (2025)

On 2 December 2025, Rare Voices Australia (RVA) facilitated the inaugural Rare Disease Disability Network Showcase (the Showcase) in Brisbane, ahead of the International Day of People with Disability (3 December). This invitation-only event brought together more than 40 leaders from rare disease groups/organisations and other key stakeholders across the sector, including people with lived… Read more: Highlights: 2025 Rare Disease Disability Network Showcase

Below are the updates for the Rare Disease Disability Project for November 2025. Stakeholder Reference Group In November 2025, Stakeholder Reference Group (SRG) members contributed their lived experience insights to some RVA Partner Projects and the review of the first resources for the nationally co-designed Rare Disease Disability Toolkit.  RVA Partner Project Grants Representatives from… Read more: Rare Disease Disability Project News: November 2025

Rare Voices Australia (RVA) continues to advocate for Australians living with rare disease disability through engagement in key disability reform initiatives.  You can read about the Rare Disease Disability Project at RVA’s website. We are proudly delivering projects for the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS). Ministerial Engagement RVA wrote to… Read more: Rare Disease Disability Advocacy Update – November 2025

Below are the updates for the Rare Disease Disability Project for October 2025. Stakeholder Reference Group In October, the SRG: Toolkit resources will be progressively released with the first resources scheduled to be available on RVA’s website in December 2025. RVA Partner Project Grants RVA Partner organisations were invited to apply for funding as part… Read more: Rare Disease Disability Project News: October 2025

Rare Voices Australia (RVA) has been engaging in several key disability initiatives throughout 2025 to advocate on behalf of Australians living with rare disease disability. You can read about the Rare Disease Disability Project at RVA’s website. We are proudly delivering projects for the Peer Support and Capacity Building grant for the National Disability Insurance… Read more: Rare Disease Disability Advocacy Update – October 2025

Rare Voices Australia (RVA) congratulates Rosemary Huxtable AO PSM, Chair of the National Health and Medical Research Strategy (National Strategy), and the broader development team on releasing Australia’s first-ever draft National Health and Medical Research (HMR) Strategy (draft Strategy). As the national peak body for Australians living with a rare disease, RVA was appointed to… Read more: Rare Voices Australia’s Submission: Draft National Health and Medical Research Strategy

Below are the updates for the Rare Disease Disability Project for September 2025. Stakeholder Reference Group The Stakeholder Reference Group (SRG) met this month and approved the design principles for the nationally codesigned Rare Disease Disability Toolkit (the Toolkit) and the resource topics for Stage 1 of the Toolkit. Stage 1 resources will be available… Read more: Rare Disease Disability Project News: September 2025

The Australian Rare Disease Research Network (ARDRN) held its first virtual meeting on 18 September 2025, with 38 rare disease researchers from a range of jurisdictions, disciplines and career stages in attendance. Rare Voices Australia (RVA) thanks everyone who joined the meeting, including members of our Scientific and Medical Advisory Committee (SMAC)—Dr Emma (Elizabeth) Palmer,… Read more: Inaugural Australian Rare Disease Research Network Meeting

Rare Voices Australia (RVA) recently provided input into the consultation on the draft Statement on Consumer and Community Involvement in Health and Medical Research (draft Statement). The National Health and Medical Research Council (NHMRC) and the Consumers Health Forum of Australia (CHF) are reviewing the Statement. Learn more about the review via the NHMRC’s website.… Read more: Rare Voices Australia Submission: Draft Statement on Consumer and Community Involvement in Health and Medical Research

The Medical Services Advisory Committee (MSAC) has published its advice on newborn bloodspot screening (NBS) for mucopolysaccharidosis type I (MPS I), mucopolysaccharidosis type II (MPS II) and Pompe disease. MSAC uses a health technology assessment framework to assess applications for the public funding of health services and technologies. Their assessment process includes consultation. After undergoing… Read more: Newborn Bloodspot Screening Update: MPS I, MPS II and Pompe Disease

The Hon Mark Butler MP, Minister for Health and Ageing and Minister for Disability and the National Disability Insurance Scheme, announced the release of the Health Technology Assessment (HTA) Review Implementation Advisory Group’s (IAG) Interim Report at PharmAus last night. In response to the findings of the IAG’s Interim Report, the Albanese Government is taking… Read more: Interim Report Released: Health Technology Assessment Review Implementation Advisory Group

Below are the updates for the Rare Disease Disability Project for August 2025. Stakeholder Reference Group The Stakeholder Reference Group (SRG) has established the priorities for the first release of resources for the Rare Disease Disability Toolkit.  These resources will be available in December 2025 and will be hosted on RVA’s website. Rare Disease Disability RVA… Read more: Rare Disease Disability Project News: August 2025

Rare Voices Australia (RVA) has been engaging in several key disability initiatives throughout 2025 to advocate on behalf of Australians living with rare disease disability. You can read about the Rare Disease Disability Project at RVA’s website. We are proudly delivering projects for the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS). … Read more: Rare Disease Disability Advocacy Update – August 2025

Between 14–18 August 2025, Rare Voices Australia (RVA) attended the 48th Annual Scientific Meeting of the Human Genetics Society of Australasia (HGSA) in Sydney. Genetic Ecosystems was this year’s theme. RVA congratulates the HGSA leadership team and local organising committee for delivering a person-centred meeting, which opened with and continually highlighted the powerful voices of… Read more: Human Genetics Society of Australasia 48th Annual Scientific Meeting: Rare Voices Australia Recap

In June, RVA Partner organisations were invited to apply for funding for RVA Partner Project Grants as part of the work being undertaken for the Rare Disease Disability Project (the Project). RVA is proudly delivering projects for the Peer Support and Capacity Building grant for the NDIS. The Project is being guided by a Stakeholder Reference Group… Read more: Rare Disease Disability Project News: July 2025

The Kids Research Institute Australia (formerly the Telethon Kids Institute) and Rare Voices Australia (RVA) have published Australia’s Top 10 Rare Disease Research Priorities. The report presents the outcomes of the Rare Disease Research Priority Setting Partnership project, which adopted a modified James Lind Alliance research approach. The aim of this work was to establish… Read more: Published: Australia’s Top 10 Rare Disease Research Priorities

Rare Voices Australia (RVA) is facilitating the first meeting for the new Australian Rare Disease Research Network (ARDRN) on 18 September 2025 between 1pm and 2pm AEST. The virtual event will also mark the official launch of Australia’s Top 10 Rare Disease Research Priorities report. RVA will facilitate a discussion about the Top 10 priorities… Read more: Invitation: Join the New Australian Rare Disease Research Network and Australia’s Top 10 Rare Disease Research Priorities Launch

On 5 June 2025, RVA attended a workshop co-hosted by Research Australia and Digital Health CRC. The workshop brought together key stakeholders from across the health and medical data, research and innovation ecosystem, including government, academia, peak bodies, and industry. A brief overview of the workshop is available on Digital Health CRC’s website. Rare Voices… Read more: Communique: Long-Term Strategic Guidance of Australia’s Digital Health and Health Data Infrastructure

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is leading the Rare Disease Disability Project (the Project). We are proudly delivering projects for the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS). This exciting, first-of-its kind 2-year Project will conclude in December 2026. Learn… Read more: Rare Disease Disability Project News: June 2025

The Royal Australasian College of Physicians (RACP), together with the Human Genetics Society of Australasia (HGSA) and metabolic specialists, have been reviewing the clinical genetics curriculum, which encompasses metabolic genetics and cancer genetics. Recent consensus suggests the clinical genetics curriculum should be considered separate to metabolic genetics, due to differences in the skills required for… Read more: Progressing Implementation of the National Strategy for Australia’s Rare Metabolic Disease Workforce: Exciting Developments for Metabolic Medicine

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is leading the Rare Disease Disability Project (the Project). We are proudly delivering projects for the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS). This exciting, first-of-its kind 2-year Project will conclude in December 2026. Learn… Read more: Rare Disease Disability Project News: May 2025

As part of the Rare Disease Disability Project (the Project), Rare Voices Australia (RVA) is facilitating virtual kitchen table peer support sessions. Two sessions will be held: Who Are the Rare Disease Disability Virtual Kitchen Table Sessions For? Members of the general public living with rare disease disability or caring for those living with rare… Read more: Rare Disease Disability Project: Virtual Kitchen Table Peer Support Sessions Commencing in May

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is leading the Rare Disease Disability Project (the Project). We are proudly delivering projects for the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS). This exciting, first-of-its kind 2-year Project will conclude in December 2026. Learn… Read more: Rare Disease Disability Project News: April 2025

The revised National Statement on Ethical Conduct in Human Research 2025 (National Statement) was published on 6 March 2025. The 2025 National Statement will take effect, and replace the 2023 National Statement, from 1 October 2025. Read more about the intended use of the National Statement. Rare Voices Australia (RVA) would like to congratulate the National Health… Read more: Released: National Statement on Ethical Conduct in Human Research 2025

Imagine a future where Australia is a leading destination for health and medical research. Have your say on improving ethics review processes. The Australian Government Department of Health and Aged Care (the Department), in collaboration with all state and territory governments via the Inter-Governmental Policy Reform Group (IGPRG), is working on national reforms to improve… Read more: National Public Consultations on the Draft Quality Standards and Accreditation Scheme for Human Research Ethics Committees

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is leading the Rare Disease Disability Project (the Project). We are proudly delivering projects for the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS). If you would like help understanding this article, please reach… Read more: Expressions of Interest: Rare Disease Disability Project Stakeholder Reference Group

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is leading the Rare Disease Disability Project (the Project). We are proudly delivering projects for the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS). This exciting, first-of-its kind 2-year Project will conclude in December 2026. Learn… Read more: Rare Disease Disability Project News: March 2025

The Health Technology Assessment Review Implementation Advisory Group (the IAG) has a dedicated web page on the Department of Health and Aged Care’s website. Rare Voices Australia (RVA) encourages all stakeholders in the rare disease sector to check the web page regularly for the latest updates. The web page includes: Ministerial letter Under the terms… Read more: Web Page: Health Technology Assessment Review Implementation Advisory Group

Rare Disease Day is marked on the last day of February annually. In 2025, Rare Disease Day falls on 28 February. Rare Disease Day is the globally coordinated movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis for people living with a rare disease. Globally, 300 million people worldwide… Read more: 2025 Rare Disease Day Media Pack and Landmark Illuminations

Thank you to those who attended Rare Voices Australia’s (RVA) Rare Disease Day Parliamentary Event hosted by the Parliamentary Friends of Australians Living with Rare Diseases on 11 February 2025. Over 100 guests, including people living with a rare disease; governments; key peak bodies; researchers; clinicians; and industry, joined us making the event one of… Read more: Highlights: 2025 Rare Disease Day Parliamentary Event

Australia’s Health Ministers have agreed to add biotinidase deficiency as a target condition in Newborn Bloodspot Screening (NBS) programs nationally. States and territories will now prepare programs to implement screening for biotinidase deficiency. Additionally, Health Ministers agreed that the following conditions will be listed as non-target conditions in Australia’s NBS programs:  You can find more information about Australia’s NBS program… Read more: Newborn Bloodspot Screening Program Update: February 2025

Rare Voices Australia (RVA) is excited to be expanding our team! We are looking for a Disability (Rare Disease) Project Officer. Nearly all of the estimated 2 million Australians living with a rare disease experience long-term impacts daily – impacts that meet the Australian Government’s definition of a disability. The disability impacts of living with… Read more: RVA Is Hiring: Disability (Rare Disease) Project Officer

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)