Category: News

On 19 June 2026, Australian Health Ministers met to discuss several health system reform priorities. As published in the follow-up Communique, Health Ministers agreed to add mucopolysaccharidosis type 1 (MPS I) and type 2 (MPS II) to Australia’s newborn bloodspot screening (NSB) programs. As stated in the Communique:

“This decision was based on the Medical Services Advisory Committee’s (MSAC) advice to screen both MPS I and MPS II. States and territories will work collaboratively with the Commonwealth to ensure NBS programs are ready for implementation.”

Rare Voices Australia (RVA) acknowledges those in the MPS community who have engaged in the NBS and MSAC processes for their advocacy.

Newborn Bloodspot Screening for Pompe Disease

At the meeting, Health Ministers supported MSAC’s recommendation not to introduce NBS for Pompe disease at this time. As stated in the Communique:

“This was because MSAC advised the current screening tests and diagnostic tests (including genetic tests) will mostly identify babies who may develop the late-onset form of Pompe disease that shows symptoms in adulthood. MSAC considered there to be a greater potential for harm than benefit from NBS for these children. The Department of Health, Disability and Ageing will continue to monitor emerging evidence relating to newborn screening for Pompe disease and reconsider its decision if appropriate.”

RVA acknowledges those who have engaged in the NBS and MSAC processes for these conditions for their efforts and ongoing commitment. We understand that this outcome is extremely disappointing for RVA Partner, the Australian Pompe Association, which has long been advocating for Pompe’s inclusion on the NBS. We acknowledge the ongoing lack of diagnostic pathways for Pompe disease and their impacts on those living with Pompe disease and their families.

As the national peak body for Australians living with a rare disease, RVA will continue to work with the Commonwealth and state governments with a focus on achieving a nationally equitable, consistent and sustainable NBS Program. 

For the latest updates regarding target conditions screened in Australia’s NBS Program, visit the Department of Health, Disability and Ageing’s website.

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 national peak body for Australians living with a rare disease, RVA was encouraged to see our feedback reflected throughout the Strategy, including explicit mention of rare diseases and a strong emphasis on person-centred approaches to national collaboration, translation, equity and policy reform.

Why This Is Important for Australians Living with a Rare Disease

The Strategy reflects many priorities long advocated for by the rare disease sector and supports the best outcomes for Australians living with a rare disease. RVA welcomes the Strategy’s Implementation Roadmap, including short term actions to establish a National Strategy Advisory Council and Life Sciences and Health Technology Advisory Council both with broad and diverse representation, including community representation. It is vital that rare disease expertise is embedded within these councils.

Importantly, the Strategy aligns with several pillars and priorities of the Australian Government’s National Strategic Action Plan for Rare Diseases. The Strategy specifically mentions the need for a national approach to:

• Priority setting that is guided by policy gaps, is inclusive of all stakeholders, and includes a whole of government approach to strategic co-investments, workforce and infrastructure planning.
• Investment in collaborative platforms and networks and global partnerships.
• Translation into health systems policy and practice for equitable outcomes.
• Expansion of clinical trials networks.
• Consumer remuneration, reimbursement and recognition in research.
• Accelerated pathways for Australian innovations, including advanced therapies.
• Future-focused workforce planning and capability development.
• Investment in areas of highest unmet need.
• A person-centred national data ecosystem that identifies and addresses critical data and infrastructure gaps.

RVA is also pleased to see the Strategy’s:

• Focus on delivering high-value care through the timely translation and implementation of research into healthcare policy and practice.
• Commitment to embedding research into routine care, including clinical trials as part of learning health systems and evidence-based medicine.
• Recognition of researcher track record metrics that value translation into policy or clinical practice as well as evidence of real-world impacts.
• Strong focus on priority populations including Aboriginal and Torres Strait Islander people and Australians living in regional, rural and remote areas.
• Recognition of the disconnect between researchers and policymakers, and the need for researchers to consider policy outcomes and engage with policymakers as a pathway to research translation. Equally, the Strategy highlights the importance of policymakers being research literate so they can incorporate evidence into timely policy reform.
• Proposed Strategy Performance Evaluation Framework, which values policy outcomes and improvements in health and equity.
• Focus on clinical trials, health services and public health research, including trial infrastructure in regional, rural and remote communities through hub-and-spoke models of care.
• Focus on consumer and communities as research collaborators, including mechanisms to hold researchers and funders accountable.
• Recognition of the need for more rapid development of research into innovative treatments, therapies, products, health technologies and world-leading models of care.
• Support for implementation of health technology assessment review recommendations, including faster access to Australian innovations, including advanced therapies.
• Acknowledgement that global partnerships and collaboration are necessary to address rare diseases, chronic conditions and fragmented health systems.
• Recognition of the need to strengthen international data partnerships that enable Australian participation in global health research and prioritise international data collaborations and trials, particularly in rare diseases, paediatric clinical trials and other cohort analyses.
• Recognition of the need to strengthen clinician-researcher pathways.
• Recognition of the need to fund areas of highest unmet need.

A Missed Opportunity for Rare Disease Disability Research

RVA’s response to the draft Strategy highlighted the importance of a whole-of-person, whole-of-systems approach to health and medical research, including rare disease disability research. Given the cross-cutting impacts of rare disease across health, disability and other systems, and the Australian Government’s integration of health and disability into one portfolio, an opportunity was missed to more explicitly recognise the need to facilitate more strategic, interrelated person-centred research approaches that are both holistic and better coordinated. The Strategy provided a timely opportunity to continue building the evidence base for integrated models of care that span health, disability and other systems to better reflect the lived experiences and needs of Australians living with a rare disease.

Next Steps

RVA looks forward to continuing to work alongside all stakeholders to support implementation of the Strategy and ensure Australians living with a rare disease are not left behind. Additionally, we will continue advocating for a dedicated Rare Disease MRFF Mission to address the significant and ongoing gaps in rare disease research funding.

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 of the NDIS. However, the Bill represents a fundamental shift away from the NDIS’ rights‑based, individualised design toward a more standardised and capped service model. This model can only work if adjacent systems are strengthened to absorb displaced needs and costs. 

RVA Does Not Support the Passing of This Bill as Drafted

The proposed reforms will disproportionately disadvantage people with rare disease disability whose needs are often more complex, multi-system, progressive and highly individualised.

RVA is particularly concerned the Bill will result in:

• Reduced parliamentary oversight of key funding and policy decisions.
• Weaker procedural fairness and review safeguards for participants.
• Eligibility criteria based on standardised functional assessments that do not reflect complexity or real‑world functioning.
• Exclusion of comorbid and non-qualifying impairments from funding consideration.
• Reliance on foundational supports that are not yet fully established.
• Reduced flexibility in planning, reassessment and responsiveness to change.
• Evidentiary requirements that are not fit-for-purpose in a rare disease disability context embedding existing systemic inequity.

These reforms risk underestimating need, compromising participant safety and wellbeing and shifting cost to already overwhelmed families.

RVA’s Recommendations

RVA is calling on the Senate Community Affairs Legislation Committee (the Committee) to safeguard people living with rare disease disability and their families and carers. Download a copy of RVA’s submission. RVA is hoping to be invited to speak at the public hearing.

About Rare Voices Australia

RVA continues to advocate for Australians living with rare disease disability through engagement in key disability reform initiatives. RVA is:

• A member of the Disability Representative and Carers Organisations (DRCO) Forum. DRCOs work closely with the National Disability Insurance Agency (NDIA) on reforms, changes and improvements to the NDIS. We are participating in the next quarterly DRCO Forums to advocate for the estimated two million Australians living with a rare disease, nearly all of whom experience long-term impacts daily—impacts that meet the Australian Government’s definition of a disability.

• A member of the Neurodegenerative Palliative Care and Rare Conditions Advisory Group (NPRAG) to the NDIS.

• Leading the Rare Disease Disability Project. We are proudly delivering projects for the Peer Support and Capacity Building grant for the NDIS.

The nationally codesigned Rare Disease Disability Toolkit (the Toolkit):

• Includes new peer-to-peer supports.
• Builds capacity in disability rights and self-advocacy.
• Supports people to better access and navigate disability and other systems (such as health, education and employment).

Rare Voices Australia (RVA) continues to promote the first round of Toolkit resources released in March 2026, which include:

1. National Disability Insurance Scheme (NDIS) and Rare Disease Disability – Part 1: Accessibility and Eligibility
2. Reasonable Adjustments in Healthcare: What Can I Ask For?
3. Navigating Air Travel with Rare Disease Disability

‘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 airline and airport consumers. This includes the new Aviation Consumer Ombuds Scheme (the Scheme), an independent service to help consumers resolve complaints about airlines and airports, that sits within the Department of Infrastructure, Transport, Regional Development, Communications, Sport and the Arts.

The Interim Aviation Ombudsperson is developing an Australian Air Passenger Travel Guide. They have contacted RVA to seek permission to incorporate and draw on the Navigating Air Travel with Rare Disease Disability Toolkit resource for a chapter on accessibility. The intention is for the Australian Air Passenger Travel Guide to be translated into several languages.

This is wonderful recognition for this quality resource and is testament to the people living with rare disease disability who helped RVA to codesign these resources, including the Rare Disease Disability Project Stakeholder Reference Group and Rare Disease Disability Network members.

The Toolkit resource was shaped by RVA’s participation in the Aviation Disability Standards co-design workshops in 2026. We extend our appreciation to the co-chairs of the Aviation Accessibility Steering Committee from the Australian Federation of Disability Organisations (AFDO) and People with Disability Australia (PWDA) for their work in this space.

About the Rare Disease Disability Toolkit

The Toolkit was codesigned with people living with rare disease disability and facilitated by RVA. The Toolkit was funded by the Australian Government through the Peer Support and Capacity Building grant for the NDIS as part of the Rare Disease Disability Project.

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 Australia (RVA) thanks the 56 ARDRN members who joined the May meeting. Additionally, we thank ARDRN members, Dr May Aung-Htut, Dr Cherylea Browne, Dr Laura Croft and Associate Professor Honey Heussler, for sharing their research and ARDRN co-chairs, Clin/Prof Gareth Baynam and Dr Lisa Ewans, for co-chairing the meeting.

The focus of the meeting was Priority 1 of Australia’s Top 10 Rare Disease Research Priorities, ‘Development of, and access to, the best treatments and cures, including clinical trials’. This priority directly aligns with several areas in the Australian Government’s National Strategic Action Plan for Rare Diseases, including Priority 2.4, ‘Enable all Australians to have access to the best available health technology’.

During the meeting, discussions highlighted both the impressive strength and breadth of Australia’s rare disease research efforts under Priority 1 and the urgent reforms needed to deliver fair and equitable access at scale. ARDRN member contributions reflected a research community with deep expertise, strong leadership, and a clear commitment to collaboration, innovation and reducing duplication.

Australia Has the Research Capability to Become a Global Leader in Rare Disease Therapeutics

Many ARDRN members are actively inviting collaboration and offering their tools, knowledge and expertise to support shared progress across the sector. Many attendees expressed the need for major reform to deliver on Priority 1, including:

• More sustainable funding—current progress is dependent on philanthropy, internal institutional support and family-led fundraising.
• Stronger national infrastructure including registries, biobanks, and shared patient-derived materials.
• Better visibility of who is working on what to reduce duplication and support national coordination.
• Clinical trial access reforms—sustainable funding for trial delivery, including access to hospital resources such as beds, theatres and equipment. Researchers are currently negotiating with sites and sponsors to fund this important work.
• Positioning trials as core activities of the health system.
• Post-trial access and reimbursement reforms for long-term therapy beyond a clinical trial—Australians currently wait between two to four years longer to access therapies than comparable countries due to delays in funding decisions. ARDRN members are concerned that this is likely to worsen as more advanced therapies become available.

The next ARDRN meeting is scheduled for Thursday, 25 June 2026 between 12pm and 1pm AEST. If you are a rare disease researcher, affiliated with a university or research institution and would like to join the ARDRN, please complete the registration form below.

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 involved in health and medical research and to influence involvement in policy, practice, and decision making. The Statement sets out how each stakeholder group can support involvement across the research system, not only within individual research projects.”

The Statement was developed collaboratively with consumers, communities and researchers, including with input from Rare Voices Australia (RVA) as the national peak body for Australians living with a rare disease throughout. RVA attended online workshops, in-person roundtables and contributed a detailed written submission to inform review of the Statement.

RVA commends the NHMRC and CHF for their careful review of the Statement and is pleased to see that so many of RVA’s recommendations have been implemented.

RVA called for the inclusion of more tangible examples of good practice as well as links to existing evidence-based resources and consumer involvement frameworks. The NHMRC responded to sector advice by including examples and case studies in the Statement that demonstrate what effective consumer involvement can look like in different types and stages of research. RVA was pleased to see the inclusion of Involve Australia’s Guidelines for Consumer Involvement in Genomics Research as a case study, and mention of the need for consumers to have clearly defined roles in research, including in reporting outcomes.  

To support implementation, the NHMRC has also included a ‘Support and Resources’ document, which provides practical guidance linked to each section of the Statement, with the intention for ongoing updates.

Other changes informed by RVA’s feedback include the:

• Removal of the original value ‘mutual benefit’ and its replacement with ‘reciprocity’. This shift in language responds directly to RVA’s concerns about the individualistic and transactional framing of ‘mutual benefit’, moving instead toward language that emphasises relationships, contribution and shared responsibility, and acknowledges that benefits may not be immediate, equal or individually experienced.
• Addition of accountability and trust as overarching values to ensure meaningful involvement, recognising the importance of dedicating time to relationship-building and valuing and acknowledging consumer contributions.
• Recognition of the importance of diverse and representative lived experience.
• Importance placed on ensuring lived experience informs research at every stage, including in the early planning phases.
• Mention of training to support effective consumer involvement for both consumers and researchers.
• Addition of accountability to the shared roles for all stakeholders.
• Mention of the need to ensure that involvement matches the capacity and respect the circumstances of consumers.
• Mention of the need to disseminate research progress and outcomes in accessible ways.

RVA encourages all rare disease researchers and consumers involved in research to familiarise themselves with the Statement and use this practical resource, together with its examples of best practice, to strengthen consumer involvement in research moving forward.

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.  

The Budget Delivers Mixed Outcomes for Australians Living with a Rare Disease

Increase in Medical Research Future Fund Investment

RVA welcomes the Australian Government’s decision to increase Medical Research Future Fund (MRFF) disbursements, lifting annual investment to $1 billion from 2030. This funding acknowledges the critical role that investment in health and medical research plays in improving health outcomes. RVA is proud to have contributed to the collective advocacy that led to this result. We will continue advocating for a dedicated Rare Disease MRFF Mission to address the significant and ongoing gaps in rare disease research funding.

Insufficient Funding for Health Technology Assessment Reform Implementation

The rare disease sector has been let down by this Budget given Australia has spent years working on critical health technology assessment (HTA) reform consultation and recommendations – reform that is critical to Australians living with a rare disease. The HTA Review Implementation Advisory Group (IAG) delivered its final report and roadmap to Minister Butler in December 2025. We acknowledge work has commenced on the three recommendations endorsed by the Minister last September. However, the Australian Government had a responsibility to use this Budget to accelerate long-awaited HTA reform to address a lack of timely and equitable access to innovative therapies.

The rare disease consumer sector, RVA and the broader rare disease sector have invested significant time, expertise, and resource into supporting the HTA reform process, trusting the government’s explicit commitments over the past four years. RVA is concerned about the government’s reliance on the upcoming strategic agreement negotiations between industry and department to progress HTA reform – a process that is not transparent or open to consumers.

Ongoing Concerns Regarding the National Disability Insurance Scheme Reset

RVA acknowledges the Australian Government’s intent to strengthen the integrity and long-term sustainability of the National Disability Insurance Scheme (NDIS). However, we remain concerned about the magnitude of cost savings announced in the Budget, and the impact this could have on vulnerable people if nuanced care is not taken.

The NDIS reset must safeguard Australians living with a rare disease by being informed by rare disease expertise. Reforms must continue upholding fundamental safeguards, including the right to the independent review of access and planning decisions.

Failure to Recognise Links Between HTA Reform, the NDIS and the MRFF

RVA previously applauded the integration of health and disability into one government portfolio, hoping it would facilitate more strategic, interrelated person-centred policy approaches. Unfortunately, this Budget misses the mark.

MRFF investment (translational research), alongside the strong focus on achieving NDIS cost savings, makes the government’s lack of investment in HTA reform particularly inexplicable. Innovative therapies have the potential to be transformative for people with rare genetic conditions. However, the current HTA system doesn’t adequately incentivise timely access to these technologies in Australia.

Strategic investment in HTA reform will improve access to these therapies, fully leverage MRFF investment, and ultimately reduce long-term disability burden and ongoing demand. Aligning NDIS cost savings with investment in health and disability system reform represents a clear opportunity to deliver better outcomes for people and more sustainable system-wide expenditure.

Next Steps for RVA and the Rare Disease Sector

RVA calls on the Australian Government to urgently prioritise investment in HTA reform implementation. We encourage all rare disease stakeholders to contact their local member and Minister Butler to call for urgent investment in HTA reform implementation.

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, addressed the National Press Club and issued a media release. Significant changes to the NDIS have been outlined, including measures to address fraud, cost growth and market failure. These objectives are understood and broadly supported by RVA.

However, the impact of the proposed reforms on people with rare, complex and lifelong disabilities will depend on how they are designed, sequenced and implemented. Sustainability cannot be achieved if cost containment becomes the practical driver of reform without sufficient attention to complexity, rarity, geography and cumulative health and disability impacts. We know that there are already existing barriers for priority populations, including people living in regional, rural and remote areas, Aboriginal and Torres Strait Islander people and people from culturally and linguistically diverse communities.

Eligibility and Functional Assessments

RVA supports a diagnosis-agnostic approach to NDIS access. However, rare disease disability is frequently multi‑system, episodic, fluctuating, degenerative or progressive, and is not well captured by standardised functional assessment tools alone.

Diagnosis, where known, remains a critical source of context for understanding complexity, anticipating functional impact over time and interpreting cumulative impairment. Removing this lens without strong safeguards risks systematically disadvantaging people with rare disease disability.

The establishment of a Technical Advisory Group is a positive step. Equitable outcomes will depend on the meaningful inclusion of rare disease disability expertise and lived experience in assessment design, testing and governance.

Boundaries with Mainstream Systems

Proposals to reinforce boundaries between the NDIS, health and other mainstream systems pose long-standing risks for people with rare disease disability. Many require lifelong health and disability support concurrently, depend on supports that do not sit neatly within service definitions, and rely on intensive care coordination across fragmented systems.

Further tightening these boundaries without parallel reform and adequate resourcing of mainstream services risks increasing service gaps and heightens the risk of postcode-based disability outcomes.

Planning, Reassessment and Support Coordination

Rare disease disability often involves incremental and non-linear change that does not align with rigid reassessment frameworks and timetables. Changes to planning processes, removal of plan rollovers and tighter reassessment thresholds increase administrative and evidentiary burden for families managing complex care.

At the same time, proposed redesign and commissioning of support coordination and plan management place essential safeguards for complexity at risk. For people with rare disease disability, these functions provide critical infrastructure, and if not managed well, risks shifting responsibility and risk onto families and unpaid carers.

Participation Funding and Caregiver Impact

Projected reductions in social and community participation funding are likely to disproportionately affect people with rare disease disability, whose participation in education, employment, recreation and inclusive community life often depends on higher cost, highly trained health‑aware disability supports.

RVA is deeply concerned that any blanket contraction in this funding will result in unmet need transferring to unpaid carers, contributing to carer workforce withdrawal, loss of respite, increased burnout and higher long‑term system costs. Community grant programs are unlikely to substitute for tailored, health‑informed and life‑sustaining supports required by people with intensive and complex rare disease disability.

Participation reforms must be risk-proportionate and codesigned with RVA and the rare disease disability community to avoid further exclusion.

Regional, Rural and Remote Australia

Expanded mandatory provider registration may improve safeguarding in some settings, but carries particular risk in regional, rural and remote areas where markets are already thin, particularly for participants with rare disease disability. Registration that results in the exit of small, specialist or sole‑trader providers risks collapsing entire support arrangements for vulnerable participants unless active market stewardship is in place.

The Importance of Ongoing Rare Disease Disability Advocacy

RVA supports reforms that strengthen the safety, integrity and long-term viability of the NDIS. We are committed to working constructively with the Australian Government to co-design this next, critical chapter of the NDIS. Embedding rarity, complexity and geography into reform design, implementation and governance is essential if the NDIS is to continue serving the people it was established to support.

About Rare Voices Australia

RVA is the national peak body for Australians living with a rare disease. We continue to advocate for Australians living with rare disease disability through engagement in key disability reform initiatives. RVA is:

• A member of the Disability Representative and Carers Organisations (DRCO) Forum. DRCOs work closely with the National Disability Insurance Agency (NDIA) on reforms, changes and improvements to the NDIS. We are participating in the next quarterly DRCO Forums to advocate for the estimated two million Australians living with a rare disease, nearly all of whom experience long-term impacts daily—impacts that meet the Australian Government’s definition of a disability.
  
  
• A member of the Neurodegenerative Palliative Care and Rare Conditions Advisory Group (NPRAG) to the NDIS.
  
  
• Leading the Rare Disease Disability Project. We are proudly delivering projects for the Peer Support and Capacity Building grant for the NDIS. 

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 of the Genomics Health Futures Mission (GHFM) grant scheme does not explicitly reference or adequately address rare diseases.

Rare Disease Research Funding Through the Missions Program

Based on RVA’s knowledge as the national peak body for Australians living with a rare disease and input from the Australian Rare Disease Research Network (ARDRN), rare diseases have primarily been represented through the GHFM. This is reflected in increased funding for rare disease projects linked to targeted genomic newborn screening initiatives. However, as stated, the newly announced round of the GHFM grant scheme does not explicitly reference or adequately address rare diseases. This further underscores the need for a dedicated Mission focused on non-oncological rare diseases as a key recommendation for the Missions Program moving forward. RVA will continue advocating for this unmet need to be addressed.

MRFF Research Missions are large programs of work that aim to bring together key researchers, health professionals, stakeholders, industry partners and consumers to tackle big health challenges. Missions are programs of work with ambitious objectives that are only possible through significant investment, leadership and collaboration.

The Need for a Coordinated National Research Strategy for Rare Diseases

The Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan) calls for a coordinated national research strategy to address systemic evidence gaps. The rare disease community has further developed Australia’s Top 10 Rare Disease Research Priorities to guide public investment towards areas of greatest unmet need. Despite this clear policy direction, non-oncological rare diseases remain largely invisible within the current MRFF Missions framework.

As part of the Missions Program evaluation, in February 2026, the Department invited RVA and other peak body groups to an online interview to capture consumer views and priorities for the MRFF Research Missions Program. RVA also contributed a detailed written submission to the MRFF Evaluations Team.

RVA’s submission outlined several recommendations to strengthen the Research Missions Program’s responsiveness to rare diseases, including:

• Establishing a dedicated MRFF Mission for non-oncological rare diseases and appointing a specialist rare disease advisory group to guide mission design and implementation.
• Aligning funding calls with the Action Plan and Australia’s Top 10 Rare Disease Research Priorities.
• Embedding policy readiness and translation planning within mission design to support translation readiness.
• Improving representative consumer and community involvement.
• Ensuring sustained funding through the full disbursement of allocated funds, and greater centralisation and coordination of funding.
• Strengthening national coordination, infrastructure and internationally interoperable trial and data systems.

Thank you to RVA’s Scientific and Medical Advisory Committee and members of the ARDRN for their expertise, which informed RVA’s submission.

Download RVA’s full submission

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 (DRCO) Forum

On 24 March 2026, RVA was pleased to be invited by the National Disability Insurance Agency (NDIA) to join the Disability Representative and Carers Organisations (DRCO) Forum, following an extensive application process. The DRCO Forum is a key national peak body mechanism through which people with disability, families and carers engage directly with the NDIA on National Disability Insurance Scheme (NDIS) policy, design, implementation and reform.

RVA’s invitation to join the DRCO Forum creates an important opportunity to embed rare disease disability expertise within this peak engagement structure. It enables the specific experiences of people living with rare, complex, progressive and fluctuating conditions—often under‑represented in mainstream disability policy—to inform NDIS reform discussions, particularly where standard models of evidence, service delivery and safeguarding do not reflect rare disease realities.

Ongoing Peak Body Participation

As the national peak body for Australians living with a rare disease, RVA continues our regular participation in the Neurodegenerative, Palliative Care and Rare Disease Advisory Group and NDIS stakeholder engagement meetings, contributing to cross sector discussions on policy development, service access and system reform.

Submissions

National Disability Insurance Scheme (NDIS) 2025-2026 Annual Pricing Review – 7 February 2026

RVA lodged a submission to the NDIS Annual Pricing Review 2025–26, highlighting the need for pricing settings that reflect the complexity, intensity and sustainability of supports required by people living with rare disease and complex disability. The submission emphasised workforce viability, access to specialised providers, and the risk of market failure for small cohorts. RVA proposes a range of innovative pricing and market-enabling solutions that consider scheme sustainability, provider viability, and service stability and quality for participants with rare and complex needs. Read RVA’s submission.

NDIS New Framework Planning Rules – 5 March 2026

RVA lodged a detailed submission to the Department of Health, Disability and Ageing on the NDIS New Framework Planning Rules, raising concerns about the lack of detail needed for meaningful consultation and safe implementation. RVA called for exposure drafts and a pause to national rollout, until validation of the Support Needs Assessment by the rare disease disability community, to ensure New Framework Planning adequately safeguards people with progressive, degenerative, episodic and fluctuating rare disease disability. Read RVA’s submission.

NDIS Evidence Advisory Committee: Positive Behaviour Support – 29 March 2026

RVA welcomed the opportunity to contribute to the NDIS Evidence Advisory Committee’s third consultation on supports under review, focusing on Positive Behaviour Support (PBS) for older children and adults living with rare disease disability. RVA and Rare Disease Disability Network members emphasised that PBS, as regulated under the NDIS Quality and Safeguards Commission framework, is often essential for this cohort due to the distinct ways behaviours of concern arise from complex, progressive or fluctuating neurological, medical, sensory and communication factors.

RVA argues that PBS should be recognised as a core safeguarding framework rather than a discrete or interchangeable intervention, with outcomes assessed longitudinally and informed by lived experience as well as formal evidence, particularly for people with progressive, fluctuating or highly complex rare disease disability. Read RVA’s submission.

NDIS: Improving Service Agreements – 31 March 2026

RVA welcomed the opportunity to contribute to the NDIS consultation on Improving Service Agreements led by the NDIS Quality and Safeguards Commission, informed by participation in the NDIS‑led peak body consultation on 12 March 2026. Drawing on feedback from Rare Disease Disability Network members and people living with rare disease disability, RVA’s submission calls for system‑wide, rights‑affirming reform that clearly explains when service agreements are required, identifies the type of arrangement and associated responsibilities in plain English, embeds safeguards and improves accessibility. The submission also proposes a participant‑led, integrated digital service agreement system within the NDIS portal, supported by strengthened privacy and data standards, and co‑designed with people with lived experience, to ensure service agreements genuinely support choice, control, safety and continuity of care for people living with rare disease disability. Read RVA’s submission.

Consultations

Disability Safeguards Framework Consultation 

On 19 February, RVA was invited to participate in a peak body consultation on the Disability Safeguards framework, led by Australian Healthcare Associates (AHA). RVA extended the invitation to members of the Rare Disease Disability Network and was joined by RVA Partners, Mito Foundation, Angelman Syndrome Association Australia, and Connective Tissue Disorder Network Australia (CTDNA).

Alongside our RVA Partners, RVA stressed the importance of lived experience input in shaping effective, rights-based safeguards, while reducing the burden of self-advocacy to ensure systems, including government frameworks, are effectively implemented. RVA highlighted gaps in safeguards for people with both complex rare conditions and intensive disability support needs and called for sector wide health and disability literacy training for providers and practitioners. 

Conferences and Sector Events

Australian Disability Strategy National Forum

RVA attended the Australian Disability Strategy National Forum (the Forum) on 24-25 February 2026. The Forum focused on two key themes, health and safeguarding. Discussions highlighted ongoing systemic barriers to accessible health care for people with disability and the importance of strengthening safeguarding frameworks across service systems.

The Hon Mark Butler MP, Minister for Disability and the NDIS and the Minister for Health and Ageing, attended day 2 of the Forum. The Minister discussed the importance of disability safeguarding, a sustainable NDIS, the new Thriving Kids program and the ongoing collaboration with states, territories and the disability sector to implement disability reform. 

National Disability Research Partnership 2026 Disability Research Funding Round Launch

RVA attended the launch of the 2026 Disability Research Funding Round under the National Disability Research Partnership on 19 February. Senator the Hon Jenny McAllister, Minister for the NDIS, highlighted the importance of research partnerships with disability organisations and peak bodies, and the $5 million funding commitment to support research led by Australians living with disability. RVA welcomes the focus on co-designed research and emphasised the need for rare disease disability inclusion to ensure that evidence, policy and systems reflect the experiences of people with low-prevalence, high-complexity disability.