2023 Rare Disease Day Media Pack

RVA News

Rare Disease Day occurs on the last day of February annually. In 2023, Rare Disease Day will be marked on Tuesday 28 February. Rare Voices Australia (RVA) will be organising our annual Rare Disease Day Parliamentary Event on Wednesday, 8 March 2023. This event is invite-only to maintain stakeholder balance.  

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. RVA is the national alliance that represents Australia for Rare Disease Day annually.

2023 Rare Disease Day

The call to action for 2023 is, Share Your Colours. The campaign hashtags are: #RareDiseaseDay #LightUpForRare #ShareYourColours

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 2023 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. You can see which landmarks are illuminating for Rare Disease Day in Australia via this document*. Thank you to the small group of volunteers who have secured landmark illuminations for 2023 with assistance from RVA as needed.

*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. We encourage you to customise the media release template as needed.

Rare Disease Day illuminations media release template [Word document]

One-pager with more information about 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]