Press Release: Share Your Colours for Rare Disease Day

Today, 28 February 2022, is Rare Disease Day; the day dedicated to raising awareness for the 300 million people living with a rare disease around the world. 

Across the globe, the rare disease community and its supporters are coming together today to share their colours and call for more equitable access to social opportunity, treatment and care for people living with a rare disease and their families.

Thousands of events including building illuminations, fundraisers, sporting events, scientific conferences, art exhibitions, policy events and much more are taking place today in over 100 countries! Take a look at the interactive world map of Rare Disease Day events.

As part of the Rare Disease Day 2022 campaign, we highlight the stories of 16 superheroes whose experiences represent many of the wider issues faced by the rare disease community. Although Vasco, Tshepiso, Nada, Jelena, Wafic and Taka live with different diseases and come from different countries, they have a shared passion for life, shared challenges and frustrations, and a shared drive for change. Watch, like, and share the Official Rare Disease Day video to hear their inspiring stories in 46 different languages.

Yann Le Cam, Chief Executive Officer at EURORDIS said: 

On this Rare Disease Day, let’s unite in green, blue, purple and pink to raise awareness and generate change for the 300 million people living with a rare disease, their families and carers worldwide and the 30 million in Europe. Join us in the Global Chain of Lights, organise events in your community and get your message out on social media with the materials we’ve prepared together with you. Over the last 13 years, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, multicultural, and multi-lingual, but united in purpose. 

Flaminia Macchia, Executive Director at Rare Diseases International said:

For Rare Diseases International and the global rare disease community, Rare Disease Day 2022 is a moment to celebrate the momentous achievement of the first-ever UN Resolution on Persons Living with a Rare Disease and their Families. It is also an opportunity to come together to chart a roadmap to ensure the UN and its Member States keep the promise to Leave No One Behind. 

How to Share Your Colours

Joining in with the campaign couldn’t be easier. You can get involved on social media by using #RareDiseaseDay to share your colours with the rare disease community! We’ll continue to share exciting updates from around the world throughout the day so stay tuned to the Rare Disease Day Facebook, Twitter and Instagram.

We’ve also provided a set of materials, and you can easily show your support for people living with a rare disease by using the downloadable campaign visuals. Don’t forget to share them with your family, friends and network!


Monuments, offices, schools and homes are being lit up today in the Rare Disease Day colours to raise awareness for the rare disease community. 

Everyone is invited to light or decorate their home at 7 PM local time to take part in this global chain of lights.

By sharing your colours and shining a beacon from your home, office, or your town, we will spread a message of hope and solidarity across the world!

Remember to use the hashtag #LightUpForRare when sharing your pictures online!

Please share your Rare Disease Day 2022 highlights with us at [email protected]

Finally, we’d like to extend a huge thank you to all of those that have supported the campaign and the rare disease community. We extend a special thank you to all of the National Alliance partners of Rare Disease Day, this year’s superheroes, our families, friends, colleagues, nurses, doctors, support workers, carers, and patient organisations.

Together we can paint a picture of a brighter future.