Latest posts tagged with #LightUpForRare on Bluesky
Thank you all for lighting up our #RareDiseaseDay stained glass window!
You have raised an incredible £340 this year (£1,161 over the past 4 years)!
https://visufund.com/alex-tlc-light-up-for-rare
#AlexTLC #LightUpForRare #leukodystrophy
A photo of the Columbia Center in downtown Seattle lighting its crown in pink to support Rare Disease Day
I redownloaded Twitter just to grab this screenshot of a post by the Columbia Center social media team acknowledging Rare Disease Day. I promptly deleted the app again.
Lighting at the under-construction Mary Bridge Children’s Hospital in Tacoma displaying colors in support of Rare Disease Day
Lighting at the under-construction Mary Bridge Children’s Hospital in Tacoma displaying colors in support of Rare Disease Day
For Rare Disease Day (2/28), the amazing Jennifer Palermo reached out and got Seattle’s Columbia Center and the under-construction Mary Bridge Children’s Hospital in Tacoma to light up in Rare Disease Day colors!
Team Amelia Forever ❤️
#lightupforrare #rarediseaseday #raredisease #battendisease
🌇 As the sun sets, #LightUpForRare raises visibility for the 300 million people worldwide living with a rare disease.
From landmarks to homes to social feeds, lighting up keeps the conversation visible.
🔗 Learn how to participate: https://bit.ly/4saz15i
#RareDiseaseDay
Lighting JAX campuses is a small but meaningful way we show our relentless support, illuminate our persistence to find new breakthroughs, and reflect hope for the 300 million living with a rare disease. Here's a favorite time-lapse from 2022's light up.
🦓 💚💜🩵🩷 #RareDiseaseDay #LightUpForRare
🧪 🧬
Image shows the Lanyon Building illuminated in purple
This evening, the Lanyon Building will shine purple to mark #RareDiseaseDay.
We #LightUpForRare in solidarity with the millions of people worldwide who are living with rare conditions.
Find out more about the life-saving rare disease work being carried out by our experts here ➡️ ow.ly/gz4Y50YmRbS
Tout le monde peut participer à la Chaîne mondiale des lumières et partager ses couleurs! Dans un élan de solidarité mondiale, vous êtes invités à illuminer ou à décorer votre maison aux couleurs de la Journée des maladies rares à 19h, heure locale, le 28 février 2026. Vous pouvez utiliser des guirlandes, des filtres de réseaux sociaux, des bougies, des lampes disco, des décorations colorées... Laissez libre cours à votre créativité !
J'ai vu qu'il y a des actions que chacun peut faire pour sensibiliser.
A faire et partager sur les réseaux sociaux pour 19h avec le #LIGHTUPFORRARE
Our national and international #neuromuscular patient registries are proud to support #RareDiseaseDay!
Learn more about our work at jwmdrc.org/networking/registries
#LightUpForRare #ShareYourColours
#RareDiseaseDay is finally here! What better way to mark the occasion than to light up our stained glass window.
https://visufund.com/alex-tlc-light-up-for-rare
Every donation helps us continue to shine a light on #leukodystrophy and support those affected 🌟💙
#AlexTLC #LightUpForRare
#RareDiseaseDay, marked each year on the last day of February, shines a light on the 500 million people worldwide living with a rare condition.
To mark the day, the OHC illuminated @magdalenoxford.bsky.social in the colours of @rarediseaseday.bsky.social as part of the global #LightUpForRare
💜CNAG Lights Up For Rare
Tomorrow it's #RareDiseasesDay, a day to raise awareness of the 300 million people living with rare diseases worldwide
At CNAG, we improve diagnosis through genomics and help families find answers
#LightUpForRare @rarediseaseday.bsky.social @erdera.bsky.social #rarediseases
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.
🌍 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
Across the world, homes, buildings, and communities will glow in solidarity for people living with ALS and other rare diseases.
#LightUpForRare #RareDiseaseDay #GlobalChainOfLights #ALSCommunity #ALSAwareness #EndALS #CaregiverSupport #Bionews #ALSNewsToday
On Rare Disease Day, we are shining lights for the millions of people living with rare conditions, including myasthenia gravis. At 7 PM your local time on Feb 28, we illuminate together.
#LightUpForRare #RareDiseaseDay #MyastheniaGravis #MGWarrior #BioNews #MyastheniaGravisNews
Shining a light on hereditary angioedema this Rare Disease Week—because every rare voice deserves to be seen, heard, and supported. 💡
How will you #LightUpForRare?
#RareDiseaseDay #RareDiseaseWeek #LightUpForRare @rarediseasedayofficial
“Days until Rare Disease Day: 10.” The number “10” is large and white with yellow spark lines around it. The background is a blue and purple gradient, with the Rare Disease Day logo at the bottom and the hashtag “#RareDiseaseDay.”
⏰ Only 10 days to go until #RareDiseaseDay!
Get ready to light up, share your colours, and make the rare visible.
Discover events, toolkits & ways to get involved: https://go.rarediseaseday.org/RDD
Let’s make this year more than you can imagine. 💪
#LightUpForRare #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.”
⏰ 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
“Colorfully lit famous landmarks arranged in a circle against a starry background, with the text ‘#LightUpForRare – A Case Study’ in the center.”
💡 How does #LightUpForRare work in practice?
Our new #casestudy explores how organisations in Northern Ireland, Ukraine & Ghana brought the initiative to life, demonstrating how a global initiative can be used to drive by local action.
🔗 Read now: https://go.rarediseaseday.org/casestudy
Love this—count us in! We’ll help #LightUpForRare on Feb 28, coordinate with local landmarks to shine in the official colors, and share photos tagging @RareDiseases. Thanks for the toolkit—amplifying across our networks to raise awareness for the rare community. #RareDiseaseDay
Feb 28 is #RareDiseaseDay! Help raise awareness by lighting up local buildings and monuments in the official colors.
💡 You can find instructions, templates, and more here:
rarediseases.org/rare-disease...
Tag @RareDiseases and use #LightUpForRare when you post your photos on Feb 28!
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.”
🌍✨ 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
"Global chain of lights!" Above #LightUpForRare which curved around a pink globe covered in lights.
🌍💡 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
🌟 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.
🦓 As we honor freedom and unity this 4th of July, let’s also remember the 300 million people worldwide living with a #raredisease.
The fight for answers, access, and awareness is a daily battle. #independenceday2025 #LightUpForRare #4thofJuly #nmrare #nmraredisease #ziazebras
Celebrating Rare Disease Day 2025 and all those Rare Warriors that fight every day. #LightUpForRare #RareDiseaseDay
#lightupforrare #rarediseaseday #showyourcolors #raredisease @rarediseasesint.bsky.social
🔵🟢🟣 Le 28 février c’est la Journée internationale des maladies rares.
3 à 4 millions de Français sont atteints par l’une des 7 000 maladies rares connues à ce jour.
L’Hôtel de Ville s’illumine ce soir pour sensibiliser et soutenir cette cause importante.
#LIGHTUPFORRARE #Villeurbanne
Today is Rare Disease Day! Together, we stand with the 300 million people worldwide living with rare diseases. Let's recognise and highlight the voices and stories. Share your story. Share your advocacy. Share your voice. Go to: www. rarediseaseday.org/ #RareDiseaseDay #LightUpForRare
