2022 Rare Disease Day

Feb 11, 2022 | News

 What is Rare Disease Day?

Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.

Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.

Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.

Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners. Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.

How can you participate in Rare Disease Day?

Get Creative – Enter Our Rare Disease Day Competition

Share your Rare Disease Day colours (blue, pink, green or purple) through a unique artwork, expressing what it’s like to live with a rare disease, for your chance to win a True Rewards digital shopping voucher.

This artwork can be through a creative medium of your choice – examples include (but are not limited to) a painting, drawing, graphic, short film, collage, photograph etc.

Find the Rare Disease Day colours and style guide here.

The prize:

  • First place is a $350 True Rewards voucher;
  • Second place is a $150 True Rewards voucher and
  • Third place is a $50 True Rewards voucher.

TO ENTER 

To enter, email your artwork file or a photograph of your artwork to info@idfa.org.au with your name and phone number by 28 February, 11:59pm (AEST).

Read the full terms and conditions here.

UPDATE 

This competition is now closed. Congratulations to winners: 

– First prize: P. Simms

– Second prize: L. Tornatore

– Third prize: Z. Parry 

 

 Illuminate your home or encourage your local area to light up landmarks and businesses

This year  we are calling on everyone to help the rare disease community be united by a chain of lights across the world by lighting up landmarks, buildings and their homes with Rare Disease Day colours. In light of COVID-19 this chain will serve as one of the symbolic ways to break isolation globally. The more local and national buildings and monuments illuminated all strengthen the international impact!

In February 2021, over 100 landmarks were illuminated in over 38 countries around the world for Rare Disease Day. In Australia, buildings such as Adelaide Oval, City Hall Brisbane and the Town Hall in Sydney participated.

IDFA is encouraging members to light up their homes and also reach out to their local businesses and landmarks and request them to light up in the Rare Disease Day colours on the 28 February at 7pm.  

Don’t forget to let us know if you’re able to  illuminate your home, or local businesses and landmarks. We’d love to give them a shout out on social media and include them in our Rare Disease Day media activity. Email us at info@idfa.org.au 

Click here for more information. 

Download the following template to send on to your local landmarks and businesses to request them to light up for Rare Disease Day.

IDFA members

Share your story with us

This month IDFA will be reaching out to key media publications in each state with the aim of generating awareness around Rare Disease Day on 28 February.

We are hoping to put forward to media some personal stories from IDFA patients and carers to tell their story of living with or being impacted by a rare disease in order to generate awareness for immunodeficiencies.

If you are interested in being involved and sharing your story, please email us at info@idfa.org.au

Nurse holding patients hand

Advocacy

IDFA is in the process of writing a letter to key decision makers about the important issues facing rare disease patients including those with immunodeficiencies in Australia and urging them to make rare diseases a priority.

We encourage our members to send a letter or email to your local policy or national policy decision makers too.

Engage your school 

If you are a teacher or parent of school-aged children, we encourage you to incorporate or encourage your school to incorporate this lesson plan on explaining living with a rare disease to young children.  

Click here for more information, including a storybook on rare diseases and to download a school toolkit and lesson plan.

Support Rare Disease Day on Social Media 

Help to generate momentum around Rare Disease Day by spreading the word using social media.

  • You can join other supporters by following us on  our Facebook page or Instagram page and following the official Rare Disease Day Australia Facebook page  
  • Tweet about Rare Disease Day by using the official hashtag #RareDiseaseDay and #lightupforrare
  • Download social tiles, posters, stats, infographics and toolkits here.  

Keep an eye on the news area of the official Rare Disease Day website for announcements, campaign materials and so on.