EURORDIS-Rare Diseases Europe
@eurordis
For Kostiantyn, #RareDiseaseDay’s message More Than You Can Imagine means more access. Living with a rare disease in Ukraine meant navigating not only his condition, but barriers to treatment and support. 🎥 Watch his story!
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Today is #EuropeanPatientsRightsDay ✊ For people living with rare diseases, patients’ rights mean timely diagnosis, equitable access to care, and a real voice in decisions that a...
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From hospitals to genomic research centres, participants at the #EURORDISOpenAcademy x ERDERA Schools’ training week are experiencing rare disease #research and care in #action. 🏥...
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🚀 Today marked the kick-off of the European Regional Task Force on Rare Diseases! This group will help shape a European Blueprint & contribute to the Global Action Plan. Learn mo...
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Young advocates (12–21) are gathering in #Paris this week for the ERDERA Training at Institut Imagine Learning, sharing, and shaping the future of rare disease #research. 🎥 Hear...
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#Europe is entering a new chapter in rare disease policy. Through the #EuropeanRegionalTaskForce, we aim to ensure the rare disease community has a clear and striking voice in sha...
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✨ That’s a wrap on the 15th #EURPRDISAWARDS2026! Tonight in Brussels and online, we celebrated leaders driving change in the rare disease community. Congrats to all our awardees! 🎥 https://go.eurordis.org/BPA2026
🚨The results are coming soon. And they tell an urgent story! 10,700+ people shared how rare & undiagnosed conditions impact mental health and wellbeing. Join us on 18 June as we unveil the latest #RareBarometer findings and discuss what must change. 👉 https://go.eurordis.org/RBresults
What comes next for rare disease policy in Europe? Today, ahead of #ECRD2026, the rare disease community came together in Prague to advance the European Blueprint for Rare Diseases and help define the priority actions needed by and for over 30 million Europeans.
Young advocates (12–21) are gathering in #Paris this week for the ERDERA Training at Institut Imagine Learning, sharing, and shaping the future of rare disease #research. 🎥 Hear what they wish others understood about rare diseases in the video below!
🎧 For #EuropeanMentalHealthWeek, we’re highlighting a 10 Minutes With episode on mental health and rare diseases. Exploring isolation, uncertainty & the need for integrated support, it shows why mental wellbeing is essential to care. 🔗 Listen: https://go.eurordis.org/10MWytb
What happens when there is no diagnosis❓For millions, this is reality. ⏳ 5 years on average to diagnose a rare disease 🔍 44% consult 4+ healthcare professionals On #UndiagnosedDay, we stand with those still searching for answers. 🔗 https://go.eurordis.org/earlydiagnosis
Our 6 FINALISTS are here… but who will win? 👀 🗳️ Voting for the #EURORDIS Photo Award 2026 is officially OPEN! 🔗 Vote now & help us crown the winners on 24 Feb 2026: https://www.eurordis.org/black-pearl-awards/photo-award/EURORDIS
🎙️ Missed our latest #10MinutesWith? Now on YouTube 👇 Rhiannon Walls speaks with Allison Watson on advocating for ultra-rare conditions like Ring Chromosome 20 - from diagnostic challenges to the power of patient communities in influencing policy. ▶️ Watch now: https://go.eurordis.org/10MWepisode
From hospitals to genomic research centres, participants at the #EURORDISOpenAcademy x ERDERA Schools’ training week are experiencing rare disease #research and care in #action. 🏥 Stay tuned to follow their journey throughout the week!🚀 @erdera.bsky.social
Debates, role-plays, and practicing protocols. Day 3 of the EURORDIS Open Academy X @erdera.bsky.social Schools has seen our participants putting their newfound knowledge to the test. 💭 We look forward to concluding both schools with a final session of joint presentations tomorrow morning!
Le français doit réduire ces émissions ... par 30 ! Jean-Marc Jancovici - KEDGE Business School - 11/03/2024 #Jancovici #planete #écologie #climat
An encore presentation for today's #BlueskyArtshow #Tall theme. I posted this about a year ago, but these are tall and I like it. #UrbanGaze #Denver #Photography #MobilePhotography #VideoVignette Tokyo Cafe, TVARI (Pixabay)
Trump says the federal government doesn’t have any money to fund child care & health care. But he has no problem cutting those programs to fund another war in the Middle East.
RP• @cfh_unfiltered These videos are flooding MAGA algorithms, complaining about grocery and gas prices and while I don’t want to be an asshole... we told you so. Trump has always had one goal, to suck as much money from you as he can. #gasprices #groceryprices #trumpinsidertrading
Gilded Tiles Sale ends APRIL 30! Get 100 Gilded Tiles for 1,500 Shards, 40% off the regular price. Use them to pave stunning golden pathways in your world and each pavement takes between 4 to 20 tiles. Grab yours before the sale ends! #bitcraft #MMO #Sale #Gameitems #Gaming
In this week’s @cipr.co.uk 1-Minute update, I share a few of the conversations shaping our work right now: 🏛️ A House of Lords briefing on lobbying 🔬 New research grants for PR and comms ⚖️ Ongoing contribution to the English Law Promotion Panel 🎥 Full video below 📖 More info via link in comments 👇
DeBriefed: Europe’s energy-crisis plan | Renewables overtake coal | Colombia’s fossil-fuel summit ✍️ Written by @daisydunne.carbonbrief.org Read here ➡️ buff.ly/iQkVvh7 Subscribe to DeBriefed ➡️ buff.ly/J6uB9Kc
Reform election gains show historic shift in British politics #nigelfarage #reform #election #keirstarmer #labourparty #viralvideo #news #PoliticalNews #curiousfellow @highlight
She's aggressive going after loose balls. My apologies to Azzi's fans, I tried to think of a better way to say that.
⚡️Russia carried out a brutal overnight strike on Ukraine using the Oreshnik missile system. ⚡️You can support the development of our project via PayPal. Account:GE60CD0360000058966557 #Warnews #World #Ukraine #Russia #War
Uncover secrets 🔍 and seek justice with Buck Taylor in his most gripping case yet! Are you ready for the thrill? 📚✨ #ColdJustice #LinkInBioToShop #BuckTaylorMystery #ColdJusticeBook
This indie developer is making a hide-and-seek title where you paint your body to avoid detection! It's called MECCHA CHAMELEON, will you play this?
Many pediatric neurological diseases are rare and complex, affecting only a small number of children. GEMINI was created at St. Jude to meet this challenge by identifying genetic mutations and developing targeted therapies, advancing from discovery to clinical trial.
Trump's name has been documented to be in the Epstein files over 1000 times (so far). Trump claiming he’s “exonerated” by the Epstein files is just another example of his escalating pathological lying, and people are finally starting to see it. Video Credit: @cnn.com
Stories stretch wide across Alaska’s vast landscape 🏔️ Join PBS Books and the Library of Congress as they explore our literary history through early authors and new on American Stories: A Reading Road Trip. 📅 December 3 at 4 PM AKST on the PBS Books Facebook & YouTube or the PBS App.
After decades of working, paying bills, and waiting for retirement... why does the world decide to go to war now? #Retirement #RetiredLife #WarNews #darkhumor
This campaign is about more than one seat in Congress. It's about whether working people finally get a voice loud enough to break through the corruption and the greed that has taken over Washington. Join us in the fight.
The first reveal trailer for “Dragon Quest XII: Beyond Dreams” is here. The game reunites the legendary trio of Akira Toriyama, Koichi Sugiyama, and Yuji Horii for a brand-new fantasy adventure.
Everyone's watching Saudi vs UAE but the real story is smaller OPEC members caught in the crossfire. A price war between rich Gulf states could quietly destroy the cartel from the inside out. ▶️ zurl.co/ySSbo #OPEC #OilWar #GlobalEnergy
Checking on my vegetable garden and herb We had a good rain last night and today.Im getting some flowers on my Roma tomato plants. And my herb garden its getting there The spearmint smells wonderful,I planted basil,lemon thyme,and spearmint, planted rosemary that's on my porch #gardensky #organic
From survival to stability and purpose. After experiencing homelessness, Sara found support through a shelter and now helps others do the same. Her story proves that investing in people changes lives. Watch her journey and give today. Gifts will be matched through June 30: https://bit.ly/43h9ux7
The drive to express and understand are both deeply human. Brouhaha combines two cultural pillars—art and science—to further ask: What separates and also connects us to the delicate web of nature, our environment, other species, and one another? www.sonoluminus.com/sonoluminus/... #sonoluminus
New Jersey Governor Mikie Sherrill was barred from Delaney Hall as hunger strikers protested against torture and inhumane conditions.
Another power play goal for the Griffins as they take a commanding lead in this elimination game with the Moose.
Nominiert für den Deutschen Sachbuchpreis 2025: Martina Heßler – Sisyphos im Maschinenraum. Eine Geschichte der Fehlbarkeit von Mensch und Technologie (C.H. Beck) #DSP25
She wanted to be a painter. Today, she designs immersive digital worlds. In today's spotlight, Sofia Papadopoulou shares her journey from canvas to code, along with insights and selected works. Read it here: tympanus.net/codrops/2026...
Empower the educators who empower your students! 🚀 BSCS provides high-quality professional learning for science leaders, specialists, coaches, chairs, and more. Because great teachers deserve top-notch support. Check out our opportunities by visiting us at bscs.org/lcb 🍎 🧪 #EduSky #SciEd
Seleção brasileira faz primeiro treino para Copa do Mundo. Confira reportagem completa: glo.bo/4v6xP4u
The Bank for International Settlements sounding the alarm on big tech private credit deals. Big tech finding loopholes in order to not fully disclosure financial information to the public. @empiremustfall.bsky.social
Jeffries toured Delaney Hall. Called for it to be shut down. Health inspectors blocked. The Trump regime is running a prison camp it won’t let anyone inspect. That is not an accident. That is a cover-up.
Author Mosab Abu Toha reflects on the Nakba of 1948 and asks what the world might have seen if Palestinians had social media then. 🎬 Full episode on https://sumudpod.com 📲 Follow @dredhasan.bsky.social | @sumudpod.com | @mosababutoha.bsky.social
Life is a tornado and I’m the cow in the background that nobody talks about but everyone remembers.
Thanasi Kokkinakis had a radical pectoral surgery 15 months ago and will be playing his first Grand Slam singles match since AO ‘25 today against Terence Atmane. RG diary 📔 www.thenationalnews.com/sport/tennis...
MMA over boxing? A bold take. Coach says MMA’s grit and diverse skillset outshine boxing’s sweet science. Agree or disagree? Where does elite combat skill really lie? Drop your thoughts below. Watch the full episode. #MMA #Boxing #Debate
We're in the middle of the week! Dance in the middle of the road! (Please don't!) 💃💥🚗 #lowpoly #gamedev #indiedev
Happy Pride month! 🌈 It's time to get radically pro-transgender! 🏳️⚧️ Matt Bernstein says, "Trans Rights!" 😻
Si lo comparamos con los límites en ingresos establecidos en otros países europeos, hay una desproporción clara. Lo vemos: ➡️ En París: Ingresos de 2.900€ al mes máximo en el caso más generoso. ➡️ En Berlín: Ingresos de 1.400€ al mes en viviendas para una sola persona.
This is outrageous in modern Britain. Far too many women are having to fight for years to be listened to when they have endometriosis. No one should have to go through that. We must do all we can to ensure that women receive appropriate support and treatment for endometriosis.
⚡️ 😎 💬 "For them, it's a shock. They were sure that this would never happen": Budanov spoke about the reaction within russia to the arrivals of Ukrainian drones
The Integrity Foundation’s Build Day in Utah brought together hundreds of volunteers to transform a 40-year-old park into a safe, modern and accessible space for families! Learn more: bit.ly/4einD3a #Announcement #Integrity #IntegrityFoundation #ForTheGoodDaysAhead #PuttingPeopleFirst