Hi RVA Supporter,

Marked on the last day of February annually, Rare Disease Day is this Saturday (28 February 2026)! I wish you all the best for any events you may be planning and participating in. Thank you to the small group of volunteers that coordinated this year’s landmark illuminations efforts with support from Rare Voices Australia (RVA) as needed. You can see the list of landmarks illuminating in Australia for Rare Disease Day that RVA is aware of at RVA’s website. We encourage you to send any photos of landmark illuminations and Rare Disease Day events to RVA for sharing on social media via email: communications@rarevoices.org.au.

Rare Disease Day is a globally coordinated movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis for people living with a rare disease. RVA is on the Steering Committee for Rare Disease Day, which focuses on longer term campaign strategy planning. See the official Rare Disease Day website to download the 2026 promotion materials and for the latest updates.

Parliamentary Events for Rare Disease Day

A key aim of Rare Disease Day is to raise awareness among policymakers. RVA is marking Rare Disease Day by facilitating our annual Federal Parliamentary Event on Monday, 2 March 2026. The event is being hosted by the Parliamentary Friends of Australians Living with a Rare Disease, Co-Chaired by Dr Mike Freelander MP, Member for Macarthur, Senator Wendy Askew, Senator for Tasmania, and Dr Monique Ryan MP, Member for Kooyong. Attendance is by invitation only to ensure appropriate representation across the sector. An Event Brief has been distributed to those attending. RVA will share photos across our social media channels as well as an article post-event at RVA’s website. Our team looks forward to welcoming those attending and launching the first round of resources developed for the nationally codesigned Rare Disease Disability Toolkit. These resources will be available at RVA’s website to help people advocate/speak up for themselves and use together with their support team.

I’m also looking forward to heading to Western Australia (WA) to attend the Rare Disease Day event on 10 March hosted by WA’s Parliamentary Friends of Rare Diseases. Thank you to Convenor, the Hon Klasey Hirst MLC, and Deputy Convenors, Adam Hort MLA and Stephen Pratt MLA, for their ongoing support of Australians living with a rare disease.

New Online Education Course for Health Professionals

Insights for Health Professionals: Supporting the Mental Health and Wellbeing of People Living with a Rare Disease has been published on RVA’s online education site. The course is designed for health professionals to build awareness of the impact of rare diseases on mental health and includes practical resources. This training was developed by RVA and the University of New South Wales, with input from MindSpot, people living with a rare disease, and general practitioners with experience supporting people living with a rare disease. The course is also a Royal Australian College of General Practitioners (RACGP) approved Continuing Professional Development (CPD) activity. New users will need to register before enrolling in any courses.

Nicole Millis
Chief Executive Officer
Rare Voices Australia

Personal Story of the Month

Archie's story highlights the medical complexity typically evident in rare disease and the impact that genetic testing and a diagnosis can have. As Archie says, "I’ve been told I’m quite resilient, and people have said some lovely things about how I’ve remained positive, but it’s been a long story. But it’s a story with a good ending." Archie is also an RVA Ambassador.

Rare Disease Day Parliamentary Event - 2 March 2026

RVA is facilitating our annual Rare Disease Day Federal Parliamentary Event on Monday, 2 March 2026 from 12pm to 2pm. The event will be hosted by the Parliamentary Friends of Australians Living with a Rare Disease, Co-Chaired by Dr Mike Freelander MP, Member for Macarthur, Senator Wendy Askew, Senator for Tasmania, and Dr Monique Ryan MP, Member for Kooyong. Attendance is by invitation only to ensure appropriate representation across the sector. An Event Brief has been distributed to those attending. RVA will share photos across our social media channels as well as an article post-event at RVA’s website.

2026 Rare Disease Day: Saturday 28 February

Official 2026 Rare Disease Day Video

Official 2026 Rare Disease Day Posters

Rare Disease Day is marked on the last day of February annually. In 2026, Rare Disease Day falls on Saturday 28 February. Rare Disease Day is the globally coordinated movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis for people living with a rare disease. RVA is on the Steering Committee for Rare Disease Day, which focuses on longer term campaign strategy planning. The 2026 promotion materials and the latest updates are available via the official Rare Disease Day website. 

Globally, 300 million people worldwide live 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, with the aim to achieve the best outcomes for Australians living with a rare disease. 

Landmark Illuminations in Australia

To show support for the rare disease community, several landmarks around Australia will be illuminating to mark Rare Disease Day. For a detailed list of Australian landmark illuminations that RVA is aware of, see RVA’s website. RVA thanks our small group of volunteers who coordinated this year’s efforts with support from RVA as needed. Anyone can get involved in organising landmark illuminations, which are organised through contacts at individual landmark locations.

Please note: Landmark illuminations are subject to change.

We encourage you to send any photos of landmark illuminations and Rare Disease Day events to RVA for sharing on social media via email: communications@rarevoices.org.au. Alternatively, you can tag RVA on social media. 

RVA will be hosting the next National Rare Disease Summit on 20 and 21 November 2026 in Melbourne. The 2026 Rare Disease Disability Network Showcase will take place on 19 November at the same venue. Attendance at both events is by invitation only to ensure appropriate representation across the sector. We will share more information with those invited as soon as possible. For now, please save these dates in your calendar if you anticipate receiving an invitation to either or both events.

Care, Connect, Cure is a free, inaugural hybrid summit hosted by Rare Diseases NSW, RVA Partner Genetic Alliance Australia, and Belongside Families on 27 and 28 February 2026. The event brings together researchers, clinicians, policymakers, industry, consumer advocates, and families to advance rare disease care and research in New South Wales and beyond.

Across two days, the event will explore innovation across genomics, artificial intelligence and digital health, advanced therapeutics, workforce capability, mental health, and culturally safe models of care. Louise Healy, RVA’s Education and Advocacy Manager, is presenting on Friday 27 February about supporting the mental health and wellbeing of people living with a rare disease. More information and tickets are available via the Humanitix website.

Researchers from the University of New South Wales (UNSW) are interested in hearing from parents/caregivers of children:

1. Diagnosed with a health condition following newborn screening, or

2. Diagnosed with one of the following conditions: Biotinidase deficiency, X-linked adrenoleukodystrophy (X-ALD), Tyrosinemia type 1, GAMT deficiency, or sickle cell disease.

Participation will involve a 30-45 minute telephone or video call interview on the following topics:

• Your experiences with newborn screening.

• Your experiences receiving support after your child’s diagnosis.

• Your opinions about possible changes to newborn screening programs and how best to support families.

If you are interested in participating, please visit this webpage or contact the UNSW Research Team: neoscreen@unsw.edu.au.

On behalf of all Australian Health Ministers, the Victorian Department of Health is leading the national survey on Assisted Reproductive Technology (ART) and In Vitro Fertilisation (IVF). This is an opportunity to help shape reforms that will improve quality, safety and care. Australian Health Ministers are interested in hearing from people with lived experience of ART and IVF, including people who have used services (including egg freezing), supported someone in the process (such as a partner), donors and donor-conceived people. The survey should take about 30 minutes to complete and closes on 31 March. Visit the survey on this webpage. You can also express your interest in participating in focus groups via the Expression of Interest (EOI) form at the end of the survey. The EOI closes on 6 March.

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 December 2025 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

• Biotinidase deficiency 

• Neurofibromatosis type 1 (co-developed with Children's Tumour Foundation)

• PURA syndrome (co-developed with PURA Foundation Australia) 

• SCN2A-related conditions (co-developed with SCN2A Australia)

• Tyrosinaemia type I 

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.

New to the RARE Portal 

RARE Help 

The RARE Help page consists of resources to address some of the most common questions RVA received while operating the RARE Helpline. The RARE Help page consists of resources that have been codesigned and evaluated by Australians living with a rare disease. Information pages developed include:

• Considerations for Participating in Health and Medical Research 

• Financial and Practical Supports 

• How to Find Information About a Specific Rare Disease 

• How to Find Health Care Providers for Rare Disease Care