2022 Rare Disease Day Update and Media Pack

RVA News

Rare Disease Day will be marked on 28 February 2022. As reported in December eNews, Rare Voices Australia (RVA) has been actively contributing to the development of the global Rare Disease Day campaign. The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on people’s lives.

Rare Metabolic Disease Workforce White Paper

RVA will leverage Rare Disease Day to help promote the launch of the much-anticipated Rare Metabolic Disease Workforce White Paper. ‘Sustainable systems and workforce’ is one of three foundation principles of the National Strategic Action Plan for Rare Diseases (the Action Plan). This work will help to progress one of the key priorities in the Action Plan: ‘Develop a national rare disease workforce strategy that responds to current and future demands, including the impact of genomics’.

Thank you to the Project Steering Committee, RVA Partners, people living with a rare metabolic condition, clinicians, industry and everyone else who contributed to this critical study. We look forward to sharing the White Paper findings this month.

Landmark Illuminations in Australia

Landmark illuminations will again be a focus on Rare Disease Day. We thank our small team of volunteers who have been working over the last few months to secure these illuminations. Your efforts are very much appreciated!

Click here to see the current list of landmarks around Australia as of 23 February 2022 that will be illuminating on 28 February.

RVA has put together a Media Pack for any media activity you or your organisation would like to engage in ahead of Rare Disease Day for the illuminations.

Click here to download the media release template [Word].

You can download social media assets by state and platform here.

To download a one-pager with more information about rare diseases, Rare Disease Day and RVA, click here.

You can direct any media looking for more information about rare diseases here. All Rare Disease Day assets can be downloaded from the official Rare Disease Day website.

RVA Partners that would like assistance with any planned media activities are encouraged to reach out to RVA directly: [email protected]

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. Please ensure you use the official hashtag: #RareDiseaseDay

Global Rare Disease Day Event — World Expo in Dubai

RVA’s Chief Executive Officer, Nicole Millis, will speak at the global 2022 Rare Disease Day event at the World Expo in Dubai, organised by the NGO Committee for Rare Diseases, Ågrenska Foundation, Rare Diseases International and EURORDIS-Rare Diseases Europe. The event will celebrate the adoption of the United Nations Resolution on ‘Addressing the Challenges of Persons Living with a Rare Disease and Their Families’ (the Resolution) and discuss opportunities for implementation at the international, regional and national levels. Nicole will be speaking on a panel and sharing RVA’s work in driving national advocacy and the Resolution’s potential impact in Australia.

This event marks the Fourth High-Level meeting of the NGO Committee for Rare Diseases and will be held on 28 February 2022, from 10.00 – 16.30 Gulf Standard Time (GST) at the Sweden Pavilion, World Expo, Dubai, United Arab Emirates.

Leave a Reply