Hi RVA Supporter,

It’s been another demanding month for rare disease disability advocacy with the National Disability Insurance Scheme (NDIS) Amendment (Securing the NDIS for Future Generations) Act 2026 passing through the Australian Parliament. Thank you to our RVA Partner groups/organisations and people living with rare disease disability for your advocacy efforts during this challenging time. I’d also like to acknowledge Fiona Lawton, Rare Voices Australia’s (RVA) Disability Advocacy Manager, for her leadership.

Our collective advocacy efforts contributed to the 32 additional amendments secured through the Senate. These amendments included important safeguards relating to high support needs, disability-related health supports and access to 24/7 supports for people with complex needs. RVA is now focused on implementation, working closely with the Department of Health, Disability and Ageing and the National Disability Insurance Agency (NDIA) to ensure the legislation is translated safely and effectively.

RVA participated in several NDIA stakeholder engagement activities throughout August, including attending stakeholder sessions regarding the new Support Needs Assessment (SNA) framework. The NDIA is working with RVA and the Rare Disease Disability Network (RDDN) to identify NDIS participants with complex support needs to participate in paid targeted testing opportunities. This important activity will conclude by December 2026 ahead of the roll out of the New Framework Planning in April 2027. This is our opportunity to help shape the new SNA. Learn how you can get involved at RVA’s website.

The Importance of Maintaining Momentum: Health Technology Assessment Reform Advocacy

Thank you to the RVA Partner groups/organisations and their communities that have reached out to their local Members of Parliament (MP) about utilising the government’s Mid-Year Economic and Fiscal Outlook (MYEFO) to invest in critical health technology assessment (HTA) reform. This reform presents the strongest opportunity to address the systemic inequity experienced by Australians living with a rare disease in accessing therapies.

It is important that we maintain our momentum. If you haven't already reached out to your local MP, please do so. RVA has written to every Senator and a considerable number of MPs. Parliamentarians hearing from multiple voices is important as it ensures that HTA implementation is prioritised and that the rare disease sector's input and consultation to the HTA Review was not done in vain.

How the ‘Navigating Air Travel with Rare Disease Disability’ Toolkit Resource Is Making a Difference

This month, the interim Aviation Consumer Ombuds Scheme published the Australian Air Passenger Travel Guide (the Guide) to support Australians who fly. The Guide is available on the Department of Infrastructure, Transport, Regional Development, Communications, Sport and the Arts’ website.

The Travelling with disability section draws on and links out to the Navigating Air Travel with Rare Disease Disability Toolkit resource. This is wonderful recognition for this quality resource. Thank you to the people living with rare disease disability who helped RVA to codesign the Toolkit resources, including the Rare Disease Disability Project Stakeholder Reference Group and RDDN members. The inclusion in the Guide also extends the reach of these important resources and acknowledges their broader utility across the disability sector.

Acknowledgements

On behalf of RVA and Australians living with a rare disease, I thank Wendy Askew who retired from the Senate recently. As the former Senator of Tasmania and Co-Chair of the Parliamentary Friends of Australians Living with a Rare Disease, we appreciate your support and wish you all the best.

I’d also like to welcome incoming Co-Chair and Member for Mallee, Dr Anne Webster MP. RVA looks forward to working with you alongside the other Co-Chairs.

Nicole Millis
Chief Executive Officer
Rare Voices Australia

Personal Story of the Month

Stephanie and Andrew share how isolating a rare disease diagnosis can be after their daughter Mila was diagnosed with Infantile Neuroaxonal Dystrophy (INAD). After experiencing how limited the support available was for Australian families, they asked, "What can we do?" That question led them to establish The INAD Foundation Australia.

RVA continues to advocate for Australians living with rare disease disability through engagement in disability reform activities with the Department of Health, Disability and Ageing, National Disability Insurance Scheme (NDIS) consultation processes, sector leadership forums, research collaborations and community education initiatives. See the August rare disease disability advocate update on RVA's website for more information about the NDIS legislation that passed through the Australian Parliament, NDIS engagement activities, disability policy and research and more.

The National Disability Insurance Scheme 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.

The countdown to the Rare Disease Disability Network Showcase on 19 November and National Rare Disease Summit (the 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. Invitations have been distributed. Please check your junk mail if you are expecting an invitation and have not received one. If you don't have an invitation for the Summit and are interested in attending, please complete an expression of interest.

Researchers at the University of New South Wales are interested in the experiences of siblings of people with long-term health conditions. Individuals aged 12-18 years with a sibling who lives with a long-term illness, disability or health condition are invited to participate. Participation involves an online survey that takes around 10 minutes to complete. To participate and learn more about this study, visit this webpage. 

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.

Kids Advanced Therapeutics is inviting families and carers of children with rare diseases known to the Sydney Children's Hospitals Network, who may access or have accessed advanced therapies (e.g. gene or RNA therapies), to an in-person workshop in Sydney.

Details

Date and time: Tuesday 20th October, 10:00am – 2:30pm

Location: Sydney, Kids Research (next to The Children's Hospital at Westmead)

See this webpage or the flyer for more information and to lodge an expression of interest. Contact janette.lee@health.nsw.gov.au with any questions you may have.

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 Australian Government is developing new aviation disability standards. You’re invited to share your views as part of the public consultation. This is your chance to help improve air travel accessibility for people with disability in Australia. Have your say by 11:59pm (AEST), Friday 2 October 2026.

The new standards are being co-designed with people with disability to ensure the aviation sector protects the rights of people with disability. They were a commitment in the government’s Aviation White Paper: Towards 2050, released in August 2024.

Read the public consultation paper and share your views online by making a submission or completing a survey on the aviation disability standards webpage.

You can also write an email or make a video or audio recording to send to AviationAccessibility@infrastructure.gov.au or phone 1800 621 372 (free call) during business hours.

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

• Resources for Siblings Growing Up with Rare Disease Disability (Information page)

• Carnitine acylcarnitine translocase (CACT) deficiency 

• COL4A1/A2-related disorders (Gould syndrome) 

• Distal 10q deletion syndrome 

• Glutaric acidaemia type 1 

• Glutaric acidaemia type II (Multiple acyl-CoA dehydrogenase deficiency) 

• Motor neurone disease (MND) (co-developed with MND Australia)

• Sandhoff disease

• Serpiginous choroiditis 

• Tay-Sachs disease

• X-linked intellectual disability, Cantagrel type (XLID98) 

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:

• National Disability Insurance Scheme (NDIS) and Rare Disease Disability – Part 1: Accessibility and Eligibility

• 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 

• 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. 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.