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worbenny.bsky.social
The @thecimr.bsky.social and MRC Mitochondrial Biology Unit are celebrating "Rare Research Day" TODAY!

By creating factsheets on how their work contributes to greater understanding and potential treatments.

#RareDiseaseDay #ShareYourColours #RareDiseaseDay2026 #UniversityofCambridge
February 27, 2026 at 11:24 AM
jwmdrc-registries.bsky.social
Our national and international #neuromuscular patient registries are proud to support #RareDiseaseDay!

Learn more about our work at jwmdrc.org/networking/registries

#LightUpForRare #ShareYourColours
February 28, 2026 at 11:39 AM
taylorlabncl.bsky.social
Rare Disease Day

Today, we recognise the 300 million people worldwide living with #RareDisease 💜

Check out these upcoming local events to learn more—details in the posters below!

#RareDiseaseDay #ShareYourColours
February 28, 2025 at 2:16 PM
rosemariecrps.bsky.social
#TagDerSeltenenErkrankungen #RareDiseaseDay #CRPS #MorbusSudeck #shareYourColours 🧡🧡🧡🧡🧡🧡🧡🧡
Orange Hintergrund auf dem steht crps warrior, Orange ist die Erkennungsfarbe für Crps alias Morbus Sudeck,
March 1, 2024 at 5:40 AM
petrasittemdb.bsky.social
Im Krankenhausreformgesetz der Bundesregierung kommen derzeit seltene Erkrankungen nicht vor. Das muss geändert werden, um Zentren für seltene Erkrankungen und bestehende Forschungsverbünde nicht zu gefährden. #RareDiseaseDay #RareDisease #ShareYourColours #LightUpForRare #TagderSeltenenErkrankungen
Infografik: 5% der Bevölkerung weltweit sind von einer seltenen Erkrankung betroffen. #rarediseaseday rearediseaseday.org ACHSE - Allianz Chronischer Seltener Erkrankungen
February 29, 2024 at 10:11 AM
smartaspaint.bsky.social
#RareDiseaseDay #RDD #diseases #disabilities #ShareYourColours
February 5, 2024 at 4:00 AM
karin-kelle-herfurth.de
Wo bleiben eigentlich die Zebras in der #Medizin?

Der #TagDerSeltenenErkrankungen erinnert daran, wie oft sie verborgen bleiben:

Von 7.000 Krankheiten sind 400 Mio Menschen weltweit betroffen – 4 Mio in Deutschland.

#colourUp4RARE #RareDiseaseDay #ShareYourColours
www.linkedin.com/posts/drkell...
Dr. med. Karin Kelle-Herfurth on LinkedIn: #tagderseltenenerkrankungen #colourup4rare #colourup4rare #rarediseaseday…
Wo bleiben eigentlich die Zebras in der Medizin? Haben Sie und hast Du da ein Auge drauf? Der heutige #TagDerSeltenenErkrankungen macht darauf aufmerksam…
www.linkedin.com
February 29, 2024 at 10:02 PM
rarediseaseday.bsky.social
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
November 20, 2025 at 8:00 AM
svergult.bsky.social
Today is #rarediseaseday2025

Rare diseases are rare, but there are many people living with a rare disease.

By brighten up our workplace with shades of pink, blue, green, and purple 🩷💙💚💜 we, the FunGen team, want to help raising visibility for rare diseases.

#ShareYourColours
February 28, 2025 at 8:51 PM
falko-grube.de
‼️Menschen mit seltenen Erkrankungen nicht allein lassen‼️

www.achse-online.de/de/

#RareDiseaseDay
#RareDisease
#ShareYourColours
#LightUpForRare
#TagderSeltenenErkrankungen 2/2
February 29, 2024 at 5:55 AM
lupuseurope.bsky.social
🤩 Thank you for your support this #RareDiseaseDay!

💪 Along with organisations like @rarediseaseday and @eurordis, we will carry on working towards an early diagnosis, access to treatment and equality for #RareDisease patients 🙌

#ShareYourColours
#rarediseaseday
February 28, 2025 at 7:08 PM
rarevolution.bsky.social
#rarediseases are not always visible, so #colourUp4RARE ! More #research is needed to develop new diagnostic and treatment options and to ensure reliable care. The BLACKSWAN Foundation, with #ProRaris, was in Bern to show our colours. #RAREvolution #RareDiseaseDay #ShareYourColours
March 6, 2026 at 10:16 AM
lupuseurope.bsky.social
🤩 Thank you for your support this #RareDiseaseDay!

💪 Along with organisations like @rarediseaseday.bsky.social and @eurordis.bsky.social, we will carry on working towards an early diagnosis, access to treatment and equality for #RareDisease patients 🙌

#ShareYourColours
#rarediseaseday
February 28, 2026 at 5:03 PM
varechavala.bsky.social
When you are a #raredisease researcher and you search your drawers for ideas of what to do this year...
Finger paint? Balloons? Glowsticks? Party poppers?

A week to go...
#RareDiseaseDay #Shareyourcolours #Showyourstripes
A computer screen shows the RareDiseaseDay web page. In front of it, aa pile of pink, blue, purple and green balloons, glowsticks and paint jars.
February 20, 2026 at 7:50 AM
lupuseurope.bsky.social
🦋 #Lupus is a #RareDisease that affects nearly 500,000 people in Europe and over 5 million people in the world.

‼️However, lupus affects not only patients but also their loved ones. Let's raise awareness of the importance of an early diagnosis

#RareDiseaseDay #ShareYourColours
February 28, 2026 at 11:03 AM
rarediseaseday.bsky.social
🌍 The world is lighting up for Rare Disease Day! ✨
Visit a monument near you or light up your home to join the global chain of lights.

👉 Use our toolkits & event map to get started: https://go.rarediseaseday.org/LIGHTUP

#LightUpForRare #RareDiseaseDay #ShareYourColours
A smiling young boy wearing glasses holds a bundle of glowing blue fairy lights in his hands, surrounded by soft light in a dark room.
February 25, 2026 at 8:00 AM
esottransplant.bsky.social
It's #RareDiseaseDay 2024!
We join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities.

𝗧𝗼𝗴𝗲𝘁𝗵𝗲𝗿, we make a lasting impact!
#ESOTaction #ShareYourColours
February 29, 2024 at 9:12 AM
lupuseurope.bsky.social
🦋 #Lupus is a #RareDisease that affects nearly 500,000 people in Europe and over 5 million people in the world.

‼️However, lupus affects not only patients but also their loved ones. Let's raise awareness of the importance of an early diagnosis

#RareDiseaseDay #ShareYourColours
February 28, 2025 at 11:36 AM
eurordis.bsky.social
🌟 The countdown to the #RareDiseaseDay 2026 begins! 300M people worldwide deserve not only awareness, but #equity — in care, opportunity & access. 💜

Join the campaign: #Shareyourcolours, #LightUpForRare, and fight for visibility & equity for all.
rarediseaseday.bsky.social Rare Disease Day Official @rarediseaseday.bsky.social · Nov 20
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
November 20, 2025 at 4:07 PM
lupuseurope.bsky.social
Today is #RareDiseaseDay!

And we have joined @rarediseaseday.bsky.social campaign.

Everyone deserves equal opportunities, access to healthcare ➕ early diagnosis, which is key to setting a treatment plan &, hence, achieving a good quality of life.
#ShareYourColours

www.youtube.com/watch?v=7J1o...
February 28, 2026 at 8:22 AM
lupuseurope.bsky.social
Today is #RareDiseaseDay!

And we have joined @rarediseaseday campaign.

Everyone deserves equal opportunities, access to healthcare ➕ early diagnosis, which is key to setting a treatment plan &, hence, achieving a good quality of life.
#ShareYourColours

https://s.mtrbio.com/psmkqzvomn
February 28, 2025 at 8:28 AM
rarediseaseday.bsky.social
⏰ The countdown continues…ONE MONTH until #RareDiseaseDay!

How are you going to #LightUpForRare of #ShareYourColours? We want to know!

🌍 Explore toolkits & events to get involved: https://go.rarediseaseday.org/RDD

#RareDiseaseCommunity
“Days until Rare Disease Day: 30.” The number “30” is large and white with yellow spark lines around it. The background is a gradient of blue and purple with the Rare Disease Day logo at the bottom and the hashtag “#RareDiseaseDay.”
January 28, 2026 at 1:00 PM
rarediseaseday.bsky.social
🌍✨ Join the global chain of lights this #RareDiseaseDay!
Whether you’re a family lighting up your home or an organisation joining from the office, every light adds to our global chain of lights.🌆🏠

Access our toolkits here: https://go.rarediseaseday.org/LIGHTUP
#LightUpForRare #ShareYourColours
A group of smiling people stand together in a dark room surrounded by glowing neon lights in green, pink, and yellow. The text above reads “How to Light Up for Rare Disease Day.”
December 9, 2025 at 1:00 PM
rarediseaseday.bsky.social
💜Meet our young heroes!

They’re sharing their stories to inspire others and shape the future of the rare disease community.

👉 You can read more heroes' stories here: https://go.rarediseaseday.org/heroes

#RareDiseaseDay #YoungVoices #ShareYourColours
Three young people stand smiling against a purple and blue background with text reading “Young Voices! The future generation of the rare disease community.” “Michael’s Story! Brugada Syndrome. 27 years old. “My family and friends stood like lighthouses…without them, I don’t know what would have happened. I want to help doctors make the right decisions, fast. To save lives. And to reduce mistakes.’ Read the full story!” Greek flag and a portrait of Michael, a young man wearing glasses. “Anna’s Story! Chronic Recurrent Multifocal Osteomyelitis. 17 years old. “I always felt so alone with my illnesses, and I felt that nobody understood what I was going through. Pain is only temporary, so hold onto hope and...don’t ever give up.” Read the full story!” U.S. flag and a portrait of Anna, a smiling young woman wearing a dark green dress, standing against a purple background. “Sushmita’s Story! Amelogenesis Imperfecta. 22 years old. “Growing up, the comments cut deeper than the condition itself. I embraced my introverted nature… channeling my energy into what truly mattered.’ Read the full story!” Nepal flag and a portrait of Sushmita, a young woman with long dark curly hair wearing a green lace top, standing against a turquoise and purple gradient background.
December 25, 2025 at 1:00 PM
juergenburdack.bsky.social
Zum Tag der seltenen Krankheiten am 29.02.2024. färbe ich dann mal wieder das Häuschen passend zur Kienlesbergbrücke.

#shareyourcolours
#tagderseltenenkrankheiten
#ulm
#ulmistbunt
Ein Wohnhaus ist beleuchtet mit bunten Leuchten in den Farben, lila, grün und blau.
February 28, 2024 at 6:03 PM