Hi RVA Supporter,

I was shocked and saddened to hear about the incident involving Helen Haines MP, Member for Indi, outside her electorate office in Victoria last week. The thoughts of everyone at RVA are with Helen, her family and the wider community. It goes without saying everyone should be safe at work and that elected representatives must be able to engage with their constituents and the broader community safely.

As I write, I understand that the Australian Government has fast-tracked a security review. It may be that there will be heightened security measures around access to political representatives moving forward. This likely environment makes the presence and influence of a trusted, credible and informed national peak body like Rare Voices Australia (RVA) more important than ever. RVA will continue working with key stakeholders in the rare disease sector to advocate for the best outcomes for Australians living with a rare disease.

Ban on the Use of Genetic Testing Information in Life Insurance Takes Effect

I was pleased to join RVA Scientific and Medical Advisory Committee (SMAC) members, Dr Jane Tiller and Professor Paul Lacaze at an event earlier this month to celebrate the Treasury Laws Amendment (Genetic Testing Protections in Life Insurance and Other Measures) Act 2026 coming into effect. The legislation bans life insurers from using genetic test results to discriminate against people applying for life insurance. The Hon Dr Daniel Mulino MP, Assistant Treasurer, spoke about the importance of this legislation at the event. You can find resources and fact sheets that detail the changes and explain more at Genomics Australia's website.

Congratulations once again to Jane for leading this important work and Paul for his contribution. I’d also like to acknowledge the many other stakeholders who advocated and raised awareness about this issue. Hearing Jane speak about the 10-year journey that led to this important policy change reiterated the realities that often come with advocacy. While policy is critical to reduce uncertainty and respond effectively to rare diseases, policy reform takes a long time.

While there is always more work to do, it’s important to celebrate our collective wins along the way. We must also remind ourselves of the fundamental principles that unite us like equity and protecting people’s human rights.

Rare Disease Disability Advocacy Update

RVA continues to advocate for Australians living with rare disease disability through strategic disability policy advocacy, National Disability Insurance Scheme (NDIS) reform activities, government consultation processes and cross-sector leadership forums. We are adopting a nuanced, multi-pronged approach to each issue, which typically includes lodging public submissions, targeted meetings with the Department of Health, Disability and Ageing and implementation guidance and monitoring with the National Disability Insurance Agency. Thank you to Fiona Lawton, RVA’s Disability Advocacy Manager, for leading this important work.

As you will read in our full October Rare Disease Disability Advocacy Update, a focus of RVA’s advocacy was the implementation of Support Determinations and the potential impacts on people living with rare disease disability. As NDIS reform activities continue, we acknowledge the uncertainty for many Australians living with rare disease disability. Earlier this month, RVA released a Position Statement, which highlights concerns about the cumulative impact of NDIS reform measures. RVA remains focused on ensuring new changes are put into practice in a way that works for people living with rare disease disability and their families. We will continue to emphasise the need for safeguards for people with complex, high-intensity and disability-related health support needs, including those living with progressive and degenerative rare diseases.

2026 Rare Disease Disability Network Showcase and National Rare Disease Summit

It’s hard to believe that the 2026 Rare Disease Disability Network Showcase and National Rare Disease Summit are now less than a month away! Our team is excited to welcome everyone attending. I look forward to seeing everyone who’s attending in November.

Nicole Millis
Chief Executive Officer
Rare Voices Australia

Personal Story of the Month

Garbi shares how RVA Partner, Aussie White Lion Foundation, was born out of personal experience. He writes, "Through this journey, we began to understand the challenges faced by families living with sickle cell disease, especially those who cannot afford essential medications, hospital bills, blood transfusions, and other basic medical needs."

RVA is concerned about the impacts of the latest changes to the National Disability Insurance Scheme (NDIS) on Australians living with rare disease disability. Changes to safeguards for high support needs participants came into effect from 1 October 2026.

RVA understands the updated safeguards may only be applied to participants who currently receive funded 24-hour support, rather than participants who require 24-hour support. This distinction is critically important for Australians living with rare disease disability. Despite having high intensity 24-hour supports needs, people with rare disease disability may be excluded from safeguards intended for high support needs participants. Read the full Position Statement at RVA’s website.

The Treasury Laws Amendment (Genetic Testing Protections in Life Insurance and Other Measures) Act 2026 is now in effect. The legislation bans life insurers from using genetic test results to discriminate against people applying for life insurance. Genomics Australia has developed resources and fact sheets to detail the changes, practical examples, what this may mean for you, what to do if you are unsure about what information needs to be provided to an insurer and frequently asked questions. Learn more at Genomics Australia's website. 

RVA once again congratulates RVA Scientific and Medical Advisory Committee (SMAC) member, Dr Jane Tiller, who led this important work. We also acknowledge SMAC member Professor Paul Lacaze’s contribution, and everyone else involved in advocating for this important policy change.

RVA continues to advocate for Australians living with rare disease disability through strategic disability policy advocacy, National Disability Insurance Scheme (NDIS) reform activities, government consultation processes and cross-sector leadership forums. The October update includes information about:

• The proposed NDIS Access reform and associated Functional Capacity Assessment Framework

• Support Determinations

• New Framework Planning and budgeting reform

• Disability Safeguards reform

• The Disability Discrimination Act consultation

Read the full update at RVA's website. 

Rare Disease Day is marked globally on the last day of February annually. In 2027, Rare Disease Day falls on Sunday, 28 February 2027. The countdown to Rare Disease Day is officially on! Earlier this month, the 2027 heroes were introduced alongside the new campaign materials and more. Replays of the launch webinars are available. For more information and to download the new campaign materials, go to the official Rare Disease Day website. Look out for RVA Ambassador, Ryan Zilioli, who is one of the 2027 heroes! RVA thanks Ryan for participating in the campaign.

A globally coordinated movement for rare diseases, Rare Disease Day works towards equity in social opportunity, healthcare, and access to diagnosis for people living with a rare disease. Locally, Rare Disease Day is an opportunity to raise awareness and inform policymakers about the issues faced by the Australian rare disease community. As the national peak body for Australians living with a rare disease, RVA is the national alliance representing Australia in annual Rare Disease Day preparations. We have also been appointed to the Rare Disease Day Steering Committee, which takes a longer-term strategic view of the campaign.

The countdown to the Rare Disease Disability Network Showcase on 19 November and National Rare Disease Summit on 20 and 21 November is on. Both events are being held in Melbourne and are by invitation only to ensure appropriate representation across the sector. RVA looks forward to seeing those attending next month!

Genomics Australia has released the outcomes of the Genomics Knowledge and Attitudes Survey of 2,010 Australians to understand what people know about genomics, how they feel about using it in health care, and what would help them feel more confident about genomic data use. Download the Project Summary on Genomics Australia’s website to see the outcomes.

Genomics Australia also commissioned work to identify genomics information and resources that are available for the public to help people find reliable information about health genomics. A Resources page has been developed with links to relevant resources identified by this work. A page is dedicated to Rare and Inherited Conditions, which links to the Rare Awareness Rare Education (RARE) Portal.

Plumtree and We Care Workshops are delivering a free virtual program for parents or carers who have a recently diagnosed child with neurodivergence, autism or are waiting for a diagnosis or have a child with developmental differences.

The evidence-based program aims to provide practical information and support to help you understand your child’s development, set meaningful goals, navigate the National Disability Insurance Scheme (NDIS) and look after your family’s wellbeing.

Event Details

Dates: 7, 14 and 21 November 2026

Time: 2pm - 4pm (AEDT)

Format: Online via Zoom

As each session builds on the previous week, participants are expected to attend all three sessions. To learn more and register, visit Plumtree's website. 

Health services are starting to use artificial intelligence (AI) to write and edit health information for patients, carers and families. Researchers from Canberra Health Services want to know what you think health services should tell you when AI has been used. The survey will take around 10 minutes and you will be anonymous. See the flyer for more information. The surveys close on 24 December 2026.

For more information about things to consider before participating in health and medical research, please visit the Considerations for Participating in Health and Medical Research page on the RARE Portal.

Researchers from the University of New England are conducting a study to explore health issues affecting older rural people with intellectual disabilities and barriers they may experience accessing healthcare. They are looking for rural people aged 40 years or older with an intellectual disability who might be interested in completing a short 15–20-minute survey about their health. Go to this webpage for more information and to complete the survey.

To make things a bit more fun, the researchers are also running a national baking competition. See the flyer for more information, including who can enter.

For more information about things to consider before participating in health and medical research, please visit the Considerations for Participating in Health and Medical Research page on the RARE Portal.

The 14^th Biennial Australasian Gene and Cell Therapy Society (AGCTS) conference is taking place on 11-13 November 2026 in Melbourne. The conference brings together researchers, clinicians, industry leaders and policymakers from across Australasia and around the world to share the latest advances in gene and cell therapy, foster collaboration, and chart the future of the field. Visit the conference website for more information.

A free Consumer and Patient Advocate Session is being held on 11 November from 3:30pm – 5pm. The session is designed for consumers affected by rare genetic disorders, their families and consumer advocacy groups. Learn more and reserve your spot via Eventbrite. Places are limited.

The National Disability Insurance Scheme (NDIS) is introducing the new Support Needs Assessment. It will help decide a participant’s funding and supports. People with rare disease disability can take part in paid testing. This helps to make sure the assessment:

• Works for complex, multi-system conditions, and 
• People with high or changing support needs.

If you take part in the testing, RVA is asking you to let us know. Read more about why and the testing opportunities at RVA’s website.

Rare Awareness Rare Education (RARE) Portal

Australia's Growing National Resource for Rare Diseases

The RARE Portal is a living website in ongoing development, with new information added regularly. It contains verified rare disease information and resources, customised for the Australian context. Funded by the Australian Government, the RARE Portal is a key deliverable of the National Strategic Action Plan for Rare Diseases.

RARE Portal eNewsletter

Read the June 2026 RARE Portal eNewsletter. You can subscribe to receive upcoming RARE Portal newsletters by completing this form.

Multi-Stakeholder Consultation Process

The RARE Portal consultation process is ongoing and will include individual interviews with RVA Partner organisations in 2026.

Additions to the RARE Portal

• Exstrophy-epispadias complex

• Harlequin syndrome

• Hereditary Neuropathy with liability to Pressure Palsies (HNPP)

• Immune thrombocytopenia (ITP) (co-developed with ITP Australia and New Zealand)

• Kienböck disease

• Long-chain 3-hydroxyacyl-CoA dehydrogenase (LCHAD) deficiency

• MECP2 duplication syndrome (Proximal Xq28 duplication syndrome)

• Medium-chain acyl-CoA dehydrogenase (MCAD) deficiency

• Methylmalonyl-CoA mutase deficiency

• Opitz GBBB syndrome

• Paroxysmal dyskinesia

• Propionic acidaemia

• Rubinstein-Taybi syndrome

• Very long-chain acyl-CoA dehydrogenase (VLCAD) deficiency

• Vitamin B12-responsive methylmalonic acidaemia

Contribute to the RARE Portal

All rare disease stakeholders are invited to help maintain the currency and accuracy of information on the RARE Portal. If you would like to contribute content or suggest a revision, please reach out to the RARE Portal team via the Contribute page.

RARE Help

The RARE Help page consists of resources that have been codesigned and evaluated by Australians living with a rare disease. The page consists of resources to address some of the most common questions RVA receives as the national peak body for Australians living with a rare disease. 

Rare Disease Disability Toolkit

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).

Resources:

• Rare Disease Disability Management Plan

• National Disability Insurance Scheme (NDIS) and Rare Disease Disability

• Reasonable Adjustments in Healthcare: What Can I Ask For?

• Navigating Air Travel with Rare Disease Disability

How to Use the Toolkit

Each resource includes a main guide and extra tools to help you speak up for yourself and use together with your support team. 

Share the Toolkit 

• Flyer

• Facebook: Rare Disease Disability Toolkit

• LinkedIn: Rare Disease Disability Toolkit

• Instagram: Rare Disease Disability Toolkit

Toolkit Development

The Toolkit was codesigned with people living with rare disease disability and facilitated by RVA. It 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, which continues until December 2026.

RVA Partner Project Resources

Projects led by RVA Partners also developed Toolkit resources. Read more about the RVA Partner Project Grants and resources.

Course of the Month
A Guide for Rare Disease Organisation Leaders in Australia

Starting, leading or contributing to a rare disease organisation is a challenge few of us take on by choice. Circumstances, necessity and a drive to see positive change for Australians living with a rare disease are factors that determine how most rare disease organisation leaders end up in their role. This course is for people looking to start a rare disease organisation and established rare disease organisations.