Rare Disease Day Official
@rarediseaseday.bsky.social
The global awareness raising campaign for people living with rare diseases.
🌍 28 February 2026
🌍 28 February 2026
Meet our 6 Regional Reps for Raising Youth Voices 2026! These young leaders are joining us in Barcelona to help shape the future of the rare disease community!
Follow their organisations and stay tuned for event registrations. #RaisingYouthVoices2026
Pablo Ramirez Uribe
Follow their organisations and stay tuned for event registrations. #RaisingYouthVoices2026
Pablo Ramirez Uribe
December 5, 2025 at 1:01 PM
Meet our 6 Regional Reps for Raising Youth Voices 2026! These young leaders are joining us in Barcelona to help shape the future of the rare disease community!
Follow their organisations and stay tuned for event registrations. #RaisingYouthVoices2026
Pablo Ramirez Uribe
Follow their organisations and stay tuned for event registrations. #RaisingYouthVoices2026
Pablo Ramirez Uribe
🎙️ The countdown to #RareDiseaseDay continues, and #EURORDISRareOnAir Stories is back!
💜 In this episode, we meet Annarita who lives with #CharcotMarieTooth disease type 2Z, and discover how dance helped her rediscover strength and joy.
🎧 Listen now: https://www.eurordis.org/rare-on-air/
💜 In this episode, we meet Annarita who lives with #CharcotMarieTooth disease type 2Z, and discover how dance helped her rediscover strength and joy.
🎧 Listen now: https://www.eurordis.org/rare-on-air/
December 4, 2025 at 1:00 PM
🎙️ The countdown to #RareDiseaseDay continues, and #EURORDISRareOnAir Stories is back!
💜 In this episode, we meet Annarita who lives with #CharcotMarieTooth disease type 2Z, and discover how dance helped her rediscover strength and joy.
🎧 Listen now: https://www.eurordis.org/rare-on-air/
💜 In this episode, we meet Annarita who lives with #CharcotMarieTooth disease type 2Z, and discover how dance helped her rediscover strength and joy.
🎧 Listen now: https://www.eurordis.org/rare-on-air/
🌍💡 The global chain of lights keeps growing!
Join #LightUpForRare by lighting up your building or landmark — use our Illuminations Toolkit to get started: https://go.rarediseaseday.org/LIGHTUP
💬 Already joined? Comment & tell us where you saw lights last year!
#RareDiseaseDay #ShareYourColours
Join #LightUpForRare by lighting up your building or landmark — use our Illuminations Toolkit to get started: https://go.rarediseaseday.org/LIGHTUP
💬 Already joined? Comment & tell us where you saw lights last year!
#RareDiseaseDay #ShareYourColours
December 2, 2025 at 1:01 PM
🌍💡 The global chain of lights keeps growing!
Join #LightUpForRare by lighting up your building or landmark — use our Illuminations Toolkit to get started: https://go.rarediseaseday.org/LIGHTUP
💬 Already joined? Comment & tell us where you saw lights last year!
#RareDiseaseDay #ShareYourColours
Join #LightUpForRare by lighting up your building or landmark — use our Illuminations Toolkit to get started: https://go.rarediseaseday.org/LIGHTUP
💬 Already joined? Comment & tell us where you saw lights last year!
#RareDiseaseDay #ShareYourColours
💜It’s inspiring to see what collaboration can achieve!
Events like this strengthen the rare disease community and remind us how powerful we are together.
📍Share YOUR event & find others near you: https://go.rarediseaseday.org/event
#RareDiseaseDay2026 #RareDiseaseCommunity
Events like this strengthen the rare disease community and remind us how powerful we are together.
📍Share YOUR event & find others near you: https://go.rarediseaseday.org/event
#RareDiseaseDay2026 #RareDiseaseCommunity
November 27, 2025 at 1:02 PM
💜It’s inspiring to see what collaboration can achieve!
Events like this strengthen the rare disease community and remind us how powerful we are together.
📍Share YOUR event & find others near you: https://go.rarediseaseday.org/event
#RareDiseaseDay2026 #RareDiseaseCommunity
Events like this strengthen the rare disease community and remind us how powerful we are together.
📍Share YOUR event & find others near you: https://go.rarediseaseday.org/event
#RareDiseaseDay2026 #RareDiseaseCommunity
✨Nicole’s story shows that you can change the narrative and take control, no matter the challenges you face.
Born with Primary Lymphedema–WILD Syndrome, she’s raising awareness and empowering others through fashion!
📣Share your story: https://go.rarediseaseday.org/share
#RareDiseaseDay
Born with Primary Lymphedema–WILD Syndrome, she’s raising awareness and empowering others through fashion!
📣Share your story: https://go.rarediseaseday.org/share
#RareDiseaseDay
November 25, 2025 at 1:01 PM
✨Nicole’s story shows that you can change the narrative and take control, no matter the challenges you face.
Born with Primary Lymphedema–WILD Syndrome, she’s raising awareness and empowering others through fashion!
📣Share your story: https://go.rarediseaseday.org/share
#RareDiseaseDay
Born with Primary Lymphedema–WILD Syndrome, she’s raising awareness and empowering others through fashion!
📣Share your story: https://go.rarediseaseday.org/share
#RareDiseaseDay
🎙️ 100 days to #RareDiseaseDay!
💜 #EURORDISRareOnAir Stories return with Ahmed, who reflects on his global career and how living with #PCD has deepened his strength and purpose.
🎧 Listen to his inspiring story: https://www.eurordis.org/rare-on-air/
💜 #EURORDISRareOnAir Stories return with Ahmed, who reflects on his global career and how living with #PCD has deepened his strength and purpose.
🎧 Listen to his inspiring story: https://www.eurordis.org/rare-on-air/
November 20, 2025 at 1:01 PM
🎙️ 100 days to #RareDiseaseDay!
💜 #EURORDISRareOnAir Stories return with Ahmed, who reflects on his global career and how living with #PCD has deepened his strength and purpose.
🎧 Listen to his inspiring story: https://www.eurordis.org/rare-on-air/
💜 #EURORDISRareOnAir Stories return with Ahmed, who reflects on his global career and how living with #PCD has deepened his strength and purpose.
🎧 Listen to his inspiring story: https://www.eurordis.org/rare-on-air/
The 100-day countdown to #RareDiseaseDay begins!
Meet Mak, Linges, Micah, Ayça & Burak, our heroes showing what life is like for the 300M people living with a rare disease.
Full video 🎥 youtu.be/7J1oTfoIOGw
Let’s bring about equity in more ways than even we can imagine!
#ShareYourColours
Meet Mak, Linges, Micah, Ayça & Burak, our heroes showing what life is like for the 300M people living with a rare disease.
Full video 🎥 youtu.be/7J1oTfoIOGw
Let’s bring about equity in more ways than even we can imagine!
#ShareYourColours
November 20, 2025 at 8:00 AM
The 100-day countdown to #RareDiseaseDay begins!
Meet Mak, Linges, Micah, Ayça & Burak, our heroes showing what life is like for the 300M people living with a rare disease.
Full video 🎥 youtu.be/7J1oTfoIOGw
Let’s bring about equity in more ways than even we can imagine!
#ShareYourColours
Meet Mak, Linges, Micah, Ayça & Burak, our heroes showing what life is like for the 300M people living with a rare disease.
Full video 🎥 youtu.be/7J1oTfoIOGw
Let’s bring about equity in more ways than even we can imagine!
#ShareYourColours
⚖️Equality treats everyone the same. Equity means recognising different needs and providing the right support so everyone can reach fair outcomes 🌍.
On #RareDiseaseDay, we call for equity for 300M people worldwide 💜.
🔗 Explore the toolkit and join the movement: https://go.rarediseaseday.org/equity
On #RareDiseaseDay, we call for equity for 300M people worldwide 💜.
🔗 Explore the toolkit and join the movement: https://go.rarediseaseday.org/equity
November 14, 2025 at 8:00 AM
⚖️Equality treats everyone the same. Equity means recognising different needs and providing the right support so everyone can reach fair outcomes 🌍.
On #RareDiseaseDay, we call for equity for 300M people worldwide 💜.
🔗 Explore the toolkit and join the movement: https://go.rarediseaseday.org/equity
On #RareDiseaseDay, we call for equity for 300M people worldwide 💜.
🔗 Explore the toolkit and join the movement: https://go.rarediseaseday.org/equity
Every year on the last day of February (either the 28, or 29 in leap years - the rarest day 💫) the 300M people living with a rare disease come together to call for equity for our community.
How can you get involved? Learn more: https://go.rarediseaseday.org/rdd
How can you get involved? Learn more: https://go.rarediseaseday.org/rdd
November 10, 2025 at 8:00 AM
Every year on the last day of February (either the 28, or 29 in leap years - the rarest day 💫) the 300M people living with a rare disease come together to call for equity for our community.
How can you get involved? Learn more: https://go.rarediseaseday.org/rdd
How can you get involved? Learn more: https://go.rarediseaseday.org/rdd
A disease is considered rare when it impacts fewer 1 in 2,000 people.
But, did you know that over 300 million people worldwide are living with a rare disease? That’s 3.5%-5.9% of the world’s population.
💚Learn more at rarediseaseday.org
But, did you know that over 300 million people worldwide are living with a rare disease? That’s 3.5%-5.9% of the world’s population.
💚Learn more at rarediseaseday.org
November 7, 2025 at 1:37 PM
A disease is considered rare when it impacts fewer 1 in 2,000 people.
But, did you know that over 300 million people worldwide are living with a rare disease? That’s 3.5%-5.9% of the world’s population.
💚Learn more at rarediseaseday.org
But, did you know that over 300 million people worldwide are living with a rare disease? That’s 3.5%-5.9% of the world’s population.
💚Learn more at rarediseaseday.org