EURORDIS-Rare Diseases Europe
@eurordis
🚨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
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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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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 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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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 te...
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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 shaping the European Blueprint for Rare Diseases. ⏳ Apply by 26 Feb: https://go.eurordis.org/regional-task-force
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!
🎙️ 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
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.
🎧 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
🚀 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 more 👉 https://go.eurordis.org/regional-task-force
#ECRD2026 opened this morning in Prague with a clear message: Europe has the knowledge, the momentum and the community needed to act. Now it needs coordination, political will and implementation. 👉 Stay tuned and join us online: https://go.eurordis.org/register-in
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
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
✨ 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
Rubio: "Cuba is not going to be able to wait us out or buy time. As I said in the context of Iran, the president's preference is always a negotiated agreement that's peaceful. With Cuba, the likelihood of that happening is not high."
Sign up early to save $100 on The OWL Method by OWL Venice, a 12-step course to help digestion. Early bird offer ends Tuesday, April 28! Go to owlvenice.com/nikki during a sale, and any time there’s no sale use my discount code SERENITY10 #owlvenice #digestion #gut #digest #guthealthmatters #health
Many of you will have seen this but for those of you who haven't, this is astonishing. It's what happens when people who comment on Facebook posts stand for election and actually win.
Not confirmed officially. But I think it's a safe bet . This would make an easy payday of at least $59M for the Trump family. I can see this dragged out for years in court. Regardless, take it away, Bobby D!
Journalist George Knapp says there are briefing documents on historical communication with non-human intelligence. Source: Jeremy Corbell / Sleeping Dog
Ever wondered what getting a skin check looks like? Rush dermatologist Parul Goyal, MD, shows Fox 32 Chicago anchor Anthony Ponce and answers questions about skin cancer prevention. Watch the full interview: https://rsh.md/3VMY28z
Ben Shapiro: “What Candace [Owens] is doing right now is absolutely satanic to Erika Kirk”
Senator Bennet voted to confirm Trump’s Agriculture Secretary and still stands by it, even after cuts to SNAP that hurt hundreds of thousands of Coloradans. Find out who else Bennet voted for: Bennetvotes.com #PhilForGovernor #COpolitics #Sundayscaries
👏 Play like this and be ok? 😱 Can Igor Jesus emulate Taiwo in 2022/23? 👀 Spurs in a mess @mattdaviesff.bsky.social is joined by Michael Temple, @petermblackburn.bsky.social and Franz Carr #nffc 🍎 Apple podcasts: tinyurl.com/2fuzn92b 📱 YouTube: tinyurl.com/4judvmdx
Are you wanting to learn about government contracting? All THE LINKS ARE ON MY PAGE! #Money #samstream #smallbusiness #governmentcontracting #samgov Samstream.ai samstream software is the best government contracting software on the market.
From your first interest in nephrology to years in practice, ASN membership supports you at every stage and connects you to where kidney care is going. Be part of what drives the field forward and shapes what comes next across the globe. Join ASN today: http://asn.kdny.info/KN1Y50Yyrt2
#pistons #cavs #explore #fyp #BreakingNewsUSA Full story: https://jqjo.com/2026-05-14/us/Sports/ar/bs/البيستونز-تعرضوا-للظلم-بسبب-عدم-احتساب-خطأ-مثير-للجدل-بعد-انهيار-متأخر-ضد-الكافز/1276254
Le FRQ et le MSSS annoncent le financement d’un projet pour favoriser la sécurisation culturelle dans le réseau de la santé et des services sociaux, avec des partenaires des Premières Nations et Inuit. Félicitations à Karine Millaire @umontreal.ca et son équipe! Détails: https://tinyurl.com/mryj2rm8
Save me from this simpleton boot-licking Black mother🤬 - who probably still loves tRump‼️ Fuck Tim Scott... genuinely - with a cactus
The Restaurant, Retail & Hospitality world is evolving fast — tech shifts, changing consumers, and global disruptions are reshaping everything. 🍽️🛍️ #Altum #Hospitality #Retail #RestaurantIndustry #BusinessTransformation #Growth #AltumWave #techonology #AltumStrategyGroup
“Not going to see Addy Brown in a practice jersey for awhile” Update from Iowa State Coach Fennelly on Addy Brown. Status has not changed. Still out “indefinitely”. #wbb #ncaaW
DJ Michael “5000” Watts helped shape Houston hip-hop and always showed love back to the people. His family shared he passed from torsades de pointes, a dangerous heart rhythm that can cause sudden cardiac arrest. Honoring his legacy. 🕊️ #RIPDJMichaelWatts
If that's what I think it means, we agree 100%. Our brain uses the sensors so-called "senses" (hearing, touching, smelling, tasting, seeing) to perceive and capture, then process and elaborate creatively: computational power can't do that, since it needs banks of data previously stored by us.
Die Anerkennung der Menschenwürde darf nicht Gegenstand der Debatte sein, sondern sie ist die Grundvoraussetzung dafür. 2026 finden viele Kommunal- und Landtagswahlen statt. Wir müssen die Menschen aufklären, wie rechtsextrem und gefährlich die AfD ist. #bayern #grüne #afd
The news didn’t slow down this week, and we broke it down for you. The DOJ is deleting Jan. 6 records, Iran is threatening retaliation after fresh U.S. strikes, Ken Paxton ousted Cornyn in Texas, federal workers may soon be forced to sign NDAs, and more. Take a closer look at what happened.
De arrestatie van activisten van de Gaza-Flotilla leidt tot internationale kritiek. Een van de opvarenden van de Gaza-vloot is een Nederlandse journalist, Gijs Sanders. Wat is je positie als journalist in dit soort situaties? Oorlogsverslaggever Hans Jaap Melissen:
Single player splat fest! Splatoon Raiders trailer reveals July release date. #splatoon #splatoonraiders #switch2 #nintendo
TODAY: Supreme Court hears Trump v. Slaughter #SCOTUS ICYMI: #FTC Commissioner Rebecca Kelly Slaughter joined CFA to discuss the importance of the case Listen Live Here: www.pbs.org/newshour/pol...
On The Kicker, @documentedny.bsky.social's local news innovation on Next Door. Listen in to Ethar El-Katatney and host @greenwell.bsky.social. podcasts.apple.com/us/podcast/h...
Xi hatte den orangenen Idioten mit seinem dicken Arsch auf einen weichen gepolsterten Sessel platziert. Xi's eigener Sessel war hart gepolstert. Trump sank ein und musste so immer zu Xi nach oben blicken. Das passte ihm gar nicht. 😂😂😂
Donald’s feelings are super hurt because everyone except Vanilla Ice pulled out of his political stunt… I mean concert. He says he’s going to perform for everyone instead, and that he’s even better than Elvis.😆 I wonder whether he’s gonna buy or rent his clown costume.🤡🎪
#LookAroundYou Series 2, Episode 1 - Music PEALY: Now, Synthesizer Patel, synthesizers are starting to come in all sorts of shapes and sizes. This one here, for instance, looks a bit like a calculator. SYNTHESIZER PATEL: Ah. That is quite right, Pealy. That is because it is a… (1/2)
One of my all-time favorite moments from Colbert’s show — this exchange with Dua Lipa on faith and grief.
See, I didn't mention any Israelis. I mentioned American Jews. Why it's racist is because you brought that up. Think on it. Because you're American does that mean I should blame you for everything Trump does? But if you're a racist, you'll blame all Jews for Netanyahu. Israel's just a dog whistle.
What's the most important quality for an NBA playoff team? Longterm health is becoming more and more of a priority...
🔔 Set your reminder. Something's coming. THURSDAY 21st MAY 2026. Nadia Enver is a Financial Planner, a single mum of two, and someone who has turned a life of turbulence into a career built on helping women take control of their money and their futures. 💬 Drop a 🌧️ in the comments if you're ready
Q: Was fraud found or lower standards used to verify the Forever Canada petition than others? A: No. Elections Alberta’s verification process is robust and standardized, applied to all petitions unless there are indications of fraud found. Any suggestions to the contrary are disinformation.
Tamenaga Shion talks about how honoured she was to get a dance section for her in Fast Pass
🇩🇪 Am 1. Mai 2026 kamen wir in Trier zu einem deutsch-luxemburgischen Puppywalk zusammen 🐶🇩🇪🇱🇺🇪🇺 🇬🇧 On May 1, 2026 we came together in Trier for a German-Luxembourgish puppy walk 🐶🇩🇪🇱🇺🇪🇺 Watch the full video here today at 8 PM CEST: youtu.be/IG7sp-YGT6g
Yes, pie is delicious. But pi is beautiful. Tomorrow belongs to the people who know the difference and celebrate both. Happy Pi Day to you nerds. Happy PIE day to everyone else. 🥧 ≠ π #PiDay #MathGeek #ScienceNerd #Geometry #Pi #STEM
I meant to reply to you sooner about this, Rik. D.Va lives as a spiritual part of us. We ARE D.Va. 💙🩷💙
¿Sabías que el coral es un animal? 😯 Miles de pólipos forman arrecifes que albergan una biodiversidad extraordinaria. La Gran Barrera de Coral, con más de 2.500 km, es la mayor estructura creada por organismos vivos del planeta. #DíaMundialDeLosArrecifes #WorldReefDay