Rare Disease Day is marked on the last day of February annually. In 2025, Rare Disease Day falls on 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. Globally, 300 million people worldwide live with a rare disease. Locally, Rare Disease Day is also 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.
The 2025 Rare Disease Day video showcases people living with a range of rare diseases from all around the world, including former RVA Ambassador, Tammie Rees, and her daughter Ava who lives with Maple Syrup Urine Disease, a rare metabolic disease.
Rare Voices Australia’s Role in Rare Disease Day as the National Peak Body for Australians Living with A Rare Disease
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 are also on the Rare Disease Day Steering Committee, which takes a longer-term strategic view of the campaign. RVA marks Rare Disease Day with our annual Parliamentary Event, hosted by the Parliamentary Friends of Australians Living with Rare Diseases. In 2025, the Parliamentary Event took place on 11 February 2025. Read the highlights and see the photos from the event on RVA’s website. Over 100 guests, including people living with a rare disease; governments; key peak bodies; researchers; clinicians; and industry, joined us making this year’s event one of RVA’s largest-ever Parliamentary Events. This is testament to the momentum gained by the rare disease sector in recent years.
Global Chain of Lights and Landmark Illuminations in Australia
The Global Chain of Lights is a key Rare Disease Day initiative, with the global community coming together to illuminate landmarks in support of people living with a rare disease.
Download the current list [PDF] of landmarks around Australia that will be illuminating for Rare Disease Day. *Note: landmark illuminations are subject to change and RVA will continue updating the document as needed.
If you take pictures of the illuminations or other Rare Disease Day activities and would like to share them, please email: [email protected]. Alternatively, you can tag RVA on social media.
How to Get Involved in Rare Disease Day
- Share the official 2025 Rare Disease Day video
- Download the official campaign materials via the official Rare Disease Day website
- Submit any upcoming Rare Disease Day events via this web page on the official site
- Use the official hashtag on social media: #RareDiseaseDay #MoreThanYouCanImagine
- Help organise landmark illuminations
- Approach local media to share your personal story and help raise awareness about rare diseases in Australia – RVA has put together a Media Pack for media activity you or your group/organisation would like to engage in (see below)
See the ‘Get Involved’ menu on the official Rare Disease Day website for more ideas.
2025 Rare Disease Day Media Pack
Download a media release template [Word] on RVA’s website. We encourage you to customise the media release template as needed.
Download a one-pager on RVA’s website [PDF] with more information about rare diseases, Rare Disease Day and RVA. You can send the PDF to media seeking more information about Rare Disease Day.
RVA Partner groups/organisations that would like assistance with any planned media activities are encouraged to reach out to RVA directly: [email protected]
