Rare Disease Day is the globally coordinated movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. The campaign is organised globally by EURORDIS – Rare Diseases Europe, Rare Diseases International and 68 national alliances. Rare Voices Australia (RVA) is the national alliance that represents Australia for Rare Disease Day annually.
Rare Disease Day occurs on the last day of February annually, this year, it falls on 29 February 2024 – the rarest day of the year! As the national peak body for Australians living with a rare disease, RVA will be organising our annual Rare Disease Day Parliamentary Event on Thursday, 29 February 2024. This event is invite-only to maintain stakeholder balance.
Watch the 2024 Rare Disease Day Official Video
The call to action for 2024 is, Share Your Colours.
The campaign hashtags are: #RareDiseaseDay #LightUpForRare #ShareYourColour
The Importance of Rare Disease Day Locally
Locally, Rare Disease Day is an opportunity to raise awareness and inform policymakers on the issues faced by the Australian rare disease community, in an effort to achieve meaningful change. Pillar 1 of the National Strategic Action Plan for Rare Diseases is Awareness and Education, while ‘State, national and international partnerships’ is a critical enabler.
Get Involved
You can download the 2024 campaign materials via the official Rare Disease Day website. We also encourage you to submit any events you are organising for Rare Disease Day
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.
Click here to see the current list 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.
Media Pack
RVA has put together a Media Pack for media activity you or your organisation would like to engage in.
Click here to download the media release template [Word]. We encourage you to customise the media release template as needed.
Click here to download a one-pager with more information about rare diseases, Rare Disease Day and RVA [PDF].
You can direct any media looking for more information about rare diseases here.
RVA Partners that would like assistance with any planned media activities are encouraged to reach out to RVA directly: [email protected]
