28 Februaryis Rare Disease Day
Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.
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Emily our Strong warrior
Emily was diagnosed with Nephrotic Syndrome and global developmental delay followed by genetic testing she was then diagnosed with TRIM8 related disorder. She has presented… Continue reading Emily our Strong warrior
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Amanda’s Angioedema Story
Hi, my name is Amanda and I live in England, UK. I’m 34 years old and 14 years ago, I first went into Anaphylaxis at… Continue reading Amanda’s Angioedema Story
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Siempre puedo volar
Soy Mauel, nací de 36 semanas de gestación. A los dos meses de vida mis papás se dieron cuenta que algo no andaba bien, era… Continue reading Siempre puedo volar
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Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity!
Share your storyThousands of events
in over 100countries
Every year, thousands of events are
organised across the world.
In the news
20 November was the launch of the official #RareDiseaseDay 2023 video in over 40 languages! This 20-second video kicks off the international patient-led campaign and… Continue reading Official 2023 Global Video Launch
On 25 November at 2 PM (CET), the Rare Disease Day team is hosting a download materials webinar for your Rare Disease Day campaign! This… Continue reading Register for the #RareDiseaseDay Download Materials Webinar!
In the run up to Rare Disease Day 2022, we gathered a team of expert speakers from all around the world to tackle an important… Continue reading How to speak to young children about rare diseases
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Rare Disease Day Follow 2,244 41,692
28 February 2023 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
✨There are many different kinds of events you can organise for #RareDiseaseDay!
👉 Light up monuments and buildings: https://cutt.ly/99EU8Hp
👉 Light up your home: https://cutt.ly/T9EIpbZ
👉 Post your event: https://www.rarediseaseday.org/post-your-event/
👉 Events near you: https://www.rarediseaseday.org/category/events/
Did you know? There are an estimated 200 rare cancers. For people living with a rare disease, searching for a diagnosis can be challenging. 👉 To learn more, click here : http://www.rarediseaseday.org/ Follow EURACAN’s tweets, and don’t hesitate to like or retweet !
It's #TakeoverThursday with our Portugal National Alliance partner, ✨ RD-Portugal ✨
In only two years, RD-Portugal has 32 associations, a scientific committee of 36 members, a project reaching over 3300 students and much more...
Check them out 👉 https://raras.pt
🚨 WEBINAR REMINDER 🚨
⏰ Don’t forget to register for the upcoming “How to Raise Awareness Among Healthcare Providers” webinar!
🗓️ 31 January
📌 Online 5.30-7.30 PM (CET)
👉 Register here: https://cutt.ly/f2LNhGO
#RareDiseaseDay
Did you know? Five-year survival rate is lower for patients with a rare cancer than for those diagnosed with a more common cancer.
👉 To learn more, click here : http://www.rarediseaseday.org/ Follow EURACAN’s tweets, and don’t hesitate to like or retweet!