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 next round of Rare Disease Disability Toolkit resources.
Virtual Kitchen Table Peer Support Sessions
The next virtual kitchen table peer support sessions will be held on Wednesday,13 May 2026. The topic for these sessions is, Managing the life admin – tools, tips and strategies. Come and share any hints and tips, ideas and learn from others and connect through this peer support session.
These sessions are open to people:
Living with rare disease disability.
Caring for someone living with rare disease disability.
Who are not in a formal role in any RVA Partner group/organisation*.
The sessions are especially helpful for people living with rare disease disability and caregivers who:
Are looking for community, understanding, and support.
May not have or are still looking for a condition-specific support group.
Are newly diagnosed or navigating new challenges.
One session will be held for people living with rare disease disability and a separate session will be held for caregivers of people living with rare disease disability.
Learn more about the Virtual Kitchen Table Peer Support Sessions at this web page.
Rare Disease Disability Network
The next Rare Disease Disability Network (RDDN) meeting will be held on 20 May. Members receive updates about the Project and are invited to showcase innovation and share learnings to strengthen the rare disease disability sector. Members also engage in disability reform discussions to genuinely make a difference for people living with rare disease disability. Learn more about the RDDN at RVA’s website.
Rare Voices Australia Partner Project Grants
RVA Partner Project Grants continue to progress. The latest updates can be found at RVA’s website.
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 facilitated by RVA. See the Toolkit resources at RVA’s website.
Stakeholder Reference Group
In March 2026, Stakeholder Reference Group (SRG) members prioritised additional resources for the Toolkit.
Virtual Kitchen Table Peer Support Sessions
Two virtual kitchen table peer support sessions were held on 11 March. The topic was Preparing for natural disasters and emergencies with rare disease disability. These peer support sessions offer a safe space for people living with rare disease disability and their caregivers to connect, share experiences, and feel a sense of community. Learn more about the Virtual Kitchen Table Peer Support Sessions and see the 2026 schedule at RVA’s website.
*Note: If you are an RVA Partner representative, you are welcome to join the Rare Disease Disability Network instead. Email RVA to join: [email protected]
Rare Disease Disability Network
The Rare Disease Disability Network (the RDDN) met on 18 March bringing together 20 leaders from RVA Partner organisations to discuss the progress of the Rare Disease Disability Project and engage in disability reform discussions. The RDDN is open to leaders from RVA Partner groups/organisations and other invited sector stakeholders. Learn more about the RDDN at RVA’s website.
Rare Voices Australia Partner Project Grants
RVA Partner Project Grants continue to progress. The latest updates can be found at RVA’s website.
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 a dedicated webpage for the Toolkit at RVA’s website.
Stakeholder Reference Group
In February, Stakeholder Reference Group (SRG) members continued contributing to the Toolkit resources.
Rare Voices Australia Partner Project Grants
RVA Partner Project Grants continue to progress. Please see RVA’s website for the latest updates.
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:
Living with rare disease disability.
Caring for someone living with rare disease disability.
Who are not in a formal role in any RVA Partner group/organisation*.
The sessions are especially helpful for people living with rare disease disability and caregivers who:
Are looking for community, understanding, and support.
May not have or are still looking for a condition-specific support group.
Are newly diagnosed or navigating new challenges.
One session will be held for people living with rare disease disability and a separate session will be held for caregivers of people living with rare disease disability.
The topic for these sessions is, Preparing for natural disasters and emergencies with rare disease disability.
Come and share any hints and tips, ideas and learn from others and connect through this peer support session. Learn more about the Virtual Kitchen Table Peer Support Sessions at RVA’s website.
*Note: If you are an RVA Partner representative, you are welcome to join the Rare Disease Disability Network instead. Email RVA to join: [email protected]
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:
Living with rare disease disability.
Caring for others living with rare disease disability.
Who don’t have a formal role in any RVA Partner group/organisation*.
One session will be held for people living with rare disease disability and a separate session will be held for caregivers of people living with rare disease disability.
The topic for these sessions is, Preparing for natural disasters and emergencies with rare disease disability.
Come and share any hints and tips, ideas and learn from others and connect through this peer support session. Learn more about the Virtual Kitchen Table Peer Support Sessions at RVA’s website.
*Note: If you are an RVA Partner representative, you are welcome to join the Rare Disease Disability Network instead. Email RVA to join: [email protected]
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 the RVA Partner Projects, led by Mito Foundation and Tuberous Sclerosis Australia (TSA), continue engaging with the SRG, some Rare Disease Disability Network (RDDN) members and people living with rare disease disability to identify useful resources for the rare disease community. Round 2 Projects, led by Smith-Magenis Syndrome Australia, Batten Disease Support and Research Association Australia (BDSRA) and Syndromes Without A Name (SWAN) Australia will start in 2026. Learn more about the RVA Partner Project Grants at this web page.
Rare Disease Disability Network Showcase
The first-ever Rare Disease Disability Network Showcase is being held on 2 December 2025 in Brisbane ahead of the International Day of People with Disability. The RDDN Showcase brings together leaders from rare disease groups/organisations and other invited sector stakeholders. Attendance is by invitation only to ensure appropriate representation across the sector. RVA looks forward to welcoming those attending in December. Learn more about the RDDN at this web page.
Virtual Kitchen Table Peer Support Sessions
Two (2) virtual kitchen table peer support sessions were held on 20 November 2025. The discussions focused on the disability and healthcare workforce and rare disease disability care and support, guided by the theme, Getting the Right Support: Ensuring Quality in Rare Disease Disability Care. These important peer support opportunities help connect individuals and caregivers living with rare disease disability across the country and will continue in 2026.
Note: If you are an RVA Partner representative, you are welcome to join the RDDN as these sessions are for the general public. Email RVA to join: [email protected]
Below are the updates for the Rare Disease Disability Project for October 2025.
Stakeholder Reference Group
In October, the SRG:
Provided input into the first resources being developed for the nationally codesigned Rare Disease Disability Toolkit (the Toolkit)
Assessed applications for round 2 of the RVA Partner Project Grants
Reviewed current RVA Partner projects to ensure ongoing alignment with the priorities identified by 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 of the second Rare Disease Disability Project grant round in September. Once again, RVA received a high number of applications. We thank the RVA Partners that took the time to apply. Applications were assessed on how well they aligned with grant objectives and deliverables. They were then ranked by the SRG. Based on the SRG’s ranking, RVA is delighted to offer grants to 3 RVA Partners:
Smith-Magenis Syndrome Australia is developing self-advocacy tools for parents and carers of children with delayed development to communicate better with health professionals and navigate health systems and disability supports
Batten Disease Support and Research Association Australia (BDSRA) is co-designing resources based on lived experience to help families, educators, and disability workers understand and respond to the episodic and fluctuating impacts of rare disease disability
Syndromes Without A Name (SWAN) Australia is creating an online training program for Peer Support Group Leaders. Resources will help parents and carers of children and adults with undiagnosed rare disease conditions connect with others and get the disability support that’s right for their needs
Learn more about RVA Partner Project Grants at this web page.
Rare Disease Disability Network
The RDDN met on 29 October bringing together almost 40 leaders from RVA Partner organisations to discuss the progress of the Rare Disease Disability Project and engage in disability reform discussions. Discussions included:
Presentations from RVA Partners offered grants as part of grant round 2 to provide an overview of their projects
A presentation by the National Disability Insurance Agency’s (NDIA) Children’s Policy and Pathways Branch on the new Childhood Early Intervention Pathway for children under 9
RVA’s Submission to the Inquiry into the Thriving Kids Initiative
RVA’s Submission to the review of the Disability Discrimination Act 1992
Registrations close tomorrow (31 October) for the end-of-year in-person RDDN Showcase on 2 December 2025 in Brisbane ahead of the International Day of People with Disability on 3 December. The RDDN Showcase brings together leaders from rare disease groups/organisations and other invited sector stakeholders for the first time in person. Attendance is by invitation only to ensure appropriate representation across the sector. RVA looks forward to welcoming those attending in December!
Virtual Kitchen Table Peer Support Sessions
The next virtual kitchen table peer support sessions will be held on 20 November 2025. One session will be held for people living with rare disease disability and a separate session will be held for caregivers of people living with rare disease disability.
The topic for these sessions is, Getting the Right Support: Ensuring Quality in Rare Disease Disability Care.
Come and share any hints and tips, ideas and learn from others and connect through this peer support session.
Note: If you are an RVA Partner representative, you are welcome to join the RDDN as these sessions are for the general public. Email RVA to join: [email protected]
For the latest updates about the Rare Disease Disability Project, visit RVA’s website. For all questions related to this project, please email: [email protected]
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 on RVA’s website in December 2025.
Round 2 of the Rare Disease Disability Project RVA Partner Grants opened on 18 September and close on 2 October 2025. The SRG will select three grant recipients from a shortlist of projects that meet the Grant Guidelines and Selection Criteria. Projects can focus on tailored resources for the Toolkit or be standalone resources. Organisations must be RVA Partners to apply. Learn more about the RVA Partner Project Grants at this web page.
Projects funded through grant round 1, led by RVA Partners Mito Foundation and Tuberous Sclerosis Australia, have commenced with involvement from the SRG and some Rare Disease Disability Network (RDDN) members. Learn more about their projects at this web page.
Rare Disease Disability Network
The next Rare Disease Disability Network (RDDN) meeting will take place on 29 October. RDDN members will share their feedback on Stage 1 of the Toolkit and continue engaging in discussions about disability reform. The RDDN is open to leaders from RVA Partner groups/organisations and other invited sector stakeholders. Learn more about the RDDN at this web page.
Rare Disease Disability Network Showcase
Planning is well underway for the end-of-year in-person RDDN Showcase on 2 December 2025 in Brisbane ahead of the International Day of People with Disability on 3 December. Invitations have been distributed to those invited. Attendance is by invitation only to ensure appropriate representation across the sector. The RDDN Showcase brings together leaders from rare disease groups/organisations and other invited sector stakeholders for the first time in person. Those invited must RSVP by Friday, 31 October to attend.
Virtual Kitchen Table Peer Support Sessions
Two virtual kitchen table peer support sessions were held on 25 September. The conversations focused on self-care and rare disease disability. The key question was: Where do you go for help? These sessions help bring the community’s voice to the Rare Disease Disability Project. The next sessions are being held on 20 November 2025. Register via the links at RVA’s website.
Who Are These Sessions For? These sessions are for members of the general public living with rare disease disability or caring for people living with rare disease disability.
Note: Please do not register for these sessions if you are an RVA Partner representative. You are welcome to join the RDDN. Email RVA to join: [email protected]
For the latest updates about the Rare Disease Disability Project, visit this web page.
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 immediate actions to:
commence consultation on trialling new ways to streamline assessment of medicines
begin a rolling review of the Pharmaceutical Benefits Advisory Committee (PBAC) Guidelines prioritising comparator selection and discount rate as the first areas for review
undertake rapid research into areas of high unmet clinical need and high added therapeutic value, including agreed definitions of these terms
develop a HTA stakeholder engagement framework with a particular focus on improving consumer and patient engagement
hold bi-annual stakeholder meetings to consider specific issues related to medicines for First Nations people
These actions are in response to the Interim Report from the IAG and cover letter provided to Minister Butler by the IAG Chair, Professor Andrew Wilson. This letter has been released alongside the Interim Report. The cover letter provides further insights from the IAG Chair and can be downloaded at the Department of Health, Disability and Ageing’s website.
As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) welcomes the Albanese Government’s commitment to taking the immediate actions outlined.
RVA’s Chief Executive Officer, Nicole Millis, is a consumer representative on the IAG. The IAG is helping to guide critical reforms in response to the findings and recommendations of the HTA Review Report. The consumer input gathered through the HTA Policy and Methods Review, the Enhanced Consumer Engagement Process, The New Frontier – Delivering better health for all Australians report and Conversations for Change continues to contribute and inform the IAG’s work. The interim report provides early insights from the advisory group’s work to date. The final IAG report and proposed implementation roadmap are expected to be provided to the government in January 2026.
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.
The second grant round for the Rare Disease Disability Project RVA Partner Grants will open on 18 September 2025 and close on 2 October 2025. Organisations must be RVA Partners to apply.
Shortlisted grant recipients will be selected by the SRG, and projects can focus on tailored resources for the nationally codesigned Rare Disease Disability Project Toolkit or be standalone resources. Full details will be distributed to RVA Partner organisations and the Rare Disease Disability Network (RDDN). Three grants will be awarded as part of grant round 2.
Learn more about the RVA Partner Project Grants at this web page.
Virtual Kitchen Table Peer Support Sessions
The next virtual kitchen table peer support sessions will be held on 25 September. One session will be held for people living with rare disease disability and a separate session will be held for caregivers of people living with rare disease disability.
The topic for these sessions is, Self-care and rare disease disability: where do you go for help?
Come and share any hints and tips, ideas and learn from others and connect through this peer support session. Please send any questions you may have to: [email protected].
Note: If you are an RVA Partner representative, you are welcome to join the RDDN as these sessions are for the general public. Email RVA to join: [email protected]
Rare Disease Disability Network
The RDDN met on 20 August bringing together 30 leaders from RVA Partner organisations to discuss the progress of the Rare Disease Disability Project and engage in disability reform discussions. The successful recipients from grant round 1 of the RVA Partner Project Grants (there are 2 rounds in total), Mito Foundation and Tuberous Sclerosis Australia, presented an overview of their projects to the RDDN. Disability reform discussions included presentations from the Department of Health, Disability and Ageing on NDIS New Framework Rules that are currently under development and the Department of Infrastructure, Transport, Regional Development, Communications, Sports and the Arts on co-designing the new Aviation Disability Standards. Learn more about the RDDN at RVA’s website.
Rare Disease Disability Network Showcase
Planning is well underway for the end-of-year in-person RDDN Showcase on 2 December 2025 in Brisbane ahead of the International Day of People with Disability on 3 December. Invitations have been distributed to those invited. Attendance is by invitation only to ensure appropriate representation across the sector. The RDDN Showcase brings together leaders from rare disease groups/organisations and other invited sector stakeholders for the first time in person. Those invited must RSVP by Friday, 31 October to attend.
For the latest updates about the Rare Disease Disability Project, visit this web page.
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.
RVA’s Chief Executive Officer, Nicole Millis, and Louise Healy, our Education and Advocacy Manager, were in Canberra in August for several political and departmental meetings. They met with several rare disease disability-related parliamentarians and offices, including:
Senior advisers from the Hon Mark Butler MP’s office. Minister Butler is the Minister for Health and Ageing and Minister for Disability and the National Disability Insurance Scheme (NDIS)
An adviser from Senator the Hon Anne Ruston’s office. Senator Ruston is the Shadow Minister for Health and Aged Care and Shadow Minister for Disability and the NDIS
Senator the Hon Jenny McAllister, Minister for the NDIS
Dr Mike Freelander MP, Member for Macarthur and Chair of the Standing Committee on Health, Aged Care and Disability
Dr Monique Ryan MP, Member for Kooyong and Deputy Chair of the Standing Committee on Health, Aged Care and Disability
Senator Jordon Steele-John, Senator for Western Australia
Senator Wendy Askew, Senator for Tasmania
Nicole and Louise will also be meeting with Minister Butler in early September.
Aviation Disability Standards
RVA has been actively involved in the Australian Government’s codesign process for the new Aviation Disability Standards, led by the Department of Infrastructure, Transport, Regional Development, Communications and the Arts (the Department).
As the national peak body for Australians living with a rare disease, RVA continues to advocate for inclusive and equitable transport systems that reflect the diverse needs of people with rare disease disability. RVA joined people living with disability and peak disability organisations, including the Australian Federation of Disability Organisations (AFDO) and People with Disability Australia (PWDA), in the Aviation Disability Standards co-design workshops. These workshops consisted of two virtual sessions in July and August and an in-person workshop at Sydney Airport on 12 August 2025. RVA’s participation ensured that the lived experiences of people with rare disease disability are considered in shaping aviation policy and practice.
RVA was pleased that the Hon Catherine King MP, Minister for Infrastructure, Transport, Regional Development and Local Government, and Senator the Hon Jenny McAllister, Minister for the NDIS, also attended the Sydney workshop.
The Aviation Disability Standards aim to:
Eliminate barriers to air travel for people with disability
Introduce new requirements for staff training, wayfinding, and accessible information
Ensure airlines and airports coordinate services to support passengers with disability
Consider banning policies that limit the number of passengers needing assistance on a flight
Introduce passenger assistance profiles to streamline support
The Department will consult with airlines, airports, and industry bodies before launching a formal public consultation in late 2025. RVA will continue to engage with stakeholders and share updates as the process unfolds. For more information, visit the Department’s Aviation Accessibility page.
Disability Discrimination Act Review
RVA was pleased to participate in the Disability Discrimination Act (DDA) Review consultation held in Brisbane on Thursday 28 August. Led by the Attorney-General’s Department and hosted by The Social Deck, the consultation brought together people with disability, advocates, and organisations to provide feedback on how the DDA can better protect and promote the rights of people with disability.
RVA’s involvement ensured that the perspectives of people living with rare disease disability were represented in discussions about legal protections and systemic reform. We thank the organisers for facilitating a collaborative and inclusive consultation process.
Hosted by the Queenslanders With Disability Network (QDN) and the Department of Families, Seniors, Disability Services and Child Safety, the conference is scheduled to be opened by the Hon Amanda Camm MP, Minister for Families, Seniors, and Disability Services and Minister for Child Safety and the Prevention of Domestic and Family Violence. The conference will feature discussions on disability rights and reforms, employment and social impact, and what disability inclusion looks like for the 2032 Olympics being held in Brisbane.
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