The rare disease community and its supporters come together to share the message: Rare is many. Rare is strong. Rare is proud!
Today, 28 February, is Rare Disease Day; the day dedicated to raising awareness for people living with a rare disease. Tristan, Angelina, Harvey, Syafiq, Nitzia, Zixuan, Jon-Kristian, Regina, Reza and Shambhavi are the faces representing the 300 million people living with a rare disease across six continents. Their vibrant portraits have been liked and shared across social media, reaching millions of people. We thank all of our heroes for their contribution.
Lara Chappell, Strategic Communications and Marketing Director, EURORIDIS- Rare Diseases Europe said:
“The COVID-19 global pandemic this year has been difficult across the globe for people living with a rare disease. Despite these additional challenges, we have seen tremendous support across the rare disease community, organising thousands of events for Rare Disease Day 2021. We have been delighted to see the engagement and touched to see and hear all of the amazing stories from around the world.”
There are events taking across the globe in over 100 countries and regions. Many have taken place online, with activities including family fun days, virtual walks, fundraisers, scientific conferences, art exhibitions, policy events and more. Find out more on the interactive world map of Rare Disease Day events and join one which interests you, no matter your location!!
Simona Bellagambi, Member of the EURORDIS Board of Directors, said:
“We want to take the fierce support and strength of our community to demand equitable access to social opportunity, treatment and care for the 300 million people living with a rare disease and their families around the world. To support this we’ve launched an equity toolkit, providing a series of practical tools to demand equity.”
Show your Fierce Support
Joining in with the campaign couldn’t be easier. You can get involved on social media by using #RareDiseaseDay to add your voice to the campaign! We’ll continue to share exciting updates from around the world throughout the day so stay tuned to Rare Disease Day Facebook, Twitter and Instagram.
We’ve also provided a set of promotional materials, so 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.
Sharing stories
We want to hear about your participation in the campaign!
- Upload your photos (don’t forget to mention which country you are from)
- Post details of your events
- Share your Rare Disease Day 2020 highlights with us at [email protected]
- Read more in the EQUITY toolkit.
Big, big love
Finally, we’d like to extend a huge thank you to all of those that have supported the campaign and the rare disease community. Our families, friends, nurses, doctors, support workers, carers, the undiagnosed, patient organisations and national alliances.
“We are rare, we are many, we are strong and we are proud.”
