EURORDIS-Rare Diseases Europe
@eurordis
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
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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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✨ 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...
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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
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 affect their lives. Making this a reality requires coordinated #EU action:https://go.eurordis.org/eurordisblueprint
🚀 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
The message from #ECRD2026 is clear: the momentum is here. Now it must be turned into action. From the Blueprint to calls for an EU Action Plan, discover the key discussions and takeaways from Europe's largest rare disease conference. 📖 Read more: go.eurordis.org/ecrd2026high...
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!
#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
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!
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
As #RareDiseaseDay approaches, Shum, a young advocate shares what More Than You Can Imagine means to him: Harmony. 🎶 Living with a rare disease, he sees the community like music - every person is a voice. And only together can we create true harmony. 🎥 Watch his story
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!
#theaudiovoice 558: sensiBel now in the Market! After 15 years of delivering ever-better generations of ambisonics systems, mh acoustics now offers the em64d, a sixth-order system with 64 optical MEMS microphones from sensiBel. And #AlltheAudioNewsthatMatter x4gwm.mjt.lu/nl3/vzCoA_pK...
The plan to destroy the West involves mass immigration, intentionally destabilizing society. This is all part of a calculated exposure. # #MassImmigration Join Charlie Ward & Drew Demi on The Charlie Ward Insiders Club every Wednesday at 6pm & Saturday at 3pm GMT 👉 www.charlieward.com
EuroLeague Final Four Preview: Olympiacos vs Fenerbahce #euroleague #nba #nbaeurope #basketball #basket
Typical Monday. #meme #ancientmeme #oldtimeyweb #humor #humour #heman #4nonblondes
The East Wing. The Kennedy Center. A massive gilded arch. Over and over, Trump is reshaping our nation’s capital in his own, tacky image—with no transparency, no consultation, and no respect for Congress’s role.
Politics shouldn’t be this complicated. You should be able to see everything clearly.
Billions of dollars, no disclosure—and now they can tell who their congregants to vote for. @thelisagraves.bsky.social on the new IRS rules that allow churches to endorse political candidates: www.youtube.com/watch?v=EqdZ...
How do you design effective #schoolbasedinterventions in low-resource, conflict-affected settings? @drjanegilmour.bsky.social, @umartoseeb.bsky.social & Prof Jean Francois Trani explore a psychosocial programme delivered in rural Afghan schools during political upheaval. https://bit.ly/4eNKB35
It’s #EarthDay2026 – the perfect day to look at qualifications that help us protect the environment. They include: 🌍VCSE in Nature Restoration 🌍 Foundation Qualification in Nature Restoration 🌍Skills Suite qualifications in Sustainability in Action and Sustainable Economic Development 1/2
Spurs center Victor Wembanyama, on advancing to the Western Conference finals in dominant fashion: “It’s great. Shows that we already gained a little bit of experience from our short playoff time. I felt like we put ourselves in the best positions, simple as that.”
Black Fact = 1811 (Feb. 24) - Daniel Alexander Payne, educator and pastor in the AME Church, was born on this date in 1811. Payne helped the church start schools such as Wilberforce University (1856), the oldest black private liberal arts university. He served as its first president. #theraydiotwins
📊 2026-05-23 • Artemis II: IFT-12 RETRY TONIGHT: Starship V3 Scrubbed at T-40s May 21 (Hydraulic Pin) — Window 6:30 PM EDT; Artemis II Crew Day 42 • SpaceX: IFT-12 Block 3 Second Attempt Tonight at 22:30 UTC After May 21 Scrub — Hydraulic Pin Issue Resolved; OLP-2 Inaugural & Fi… 🔗 watchboard.dev
Current generations will never fully grasp or understand how the entire 🌎 caught Michael Jackson fever for a decade basically. It'll never be replicated. You had to be there. But #Michael does good of capturing it as best as possible. It's now the highest grossing biopic in NA history. #BlueSky
Had a really fun conversation with Jaron "Boots" Ennis, who peeped that I was Puerto Rican before we sat down 😅 We discussed: 🗽 His June 27 fight vs. Xander Zayas 🤔 Who needs this more 🤝🏼 His friendship with Tyrese Maxey And more❗️ WATCH: tinyurl.com/4wn6t93u
warum scheitern so viele Crypto Projekte ? #futurevibes ist gebaut für Nachhaltigkeit nicht für das schnelle Geld
New US violations met with Iranian strike on Kuwait airbase A new series of direct military confrontations erupted between the US and Iran near Strait of Hormuz on 28 May after US Central Command said it carried out so-called “self-defense” strikes near the Iranian port city of Bandar Abbas.
Today I’ll be introducing a war powers resolution to give Congress another chance to end this reckless war of choice in Iran.
Moose had possession but the Griffins ability and willingness to block shots comes up big. They stop the Brad Lambert shot and put it into the empty net to take a 4-2 lead.
I-15 NB @ Cedar City / MP 54.1, RN 🕒 3:44 AM - 4:22 AM MT 🌡️ 49°F | Clear 📍: 37.627170,-113.122250
Main St / US-40 @ 900 N / MP 16.2, HBR 🕒 1:14 AM - 2:14 AM MT 🌡️ 55→55°F | Mostly Clear→Partly Cloudy 📍: 40.518367,-111.411544
Summer heat is melting your focus, but you can still snag those moments. Make broadcast-quality video in 60 seconds with Sleepy Motion and keep cool while capturing the chaos. #easyvideos #viral #SleepyMotion
Non racist white people far out number the racist white people. They Love Beyond Color. Lovebeyondcolorllc.com #lovebeyondcolor #equalityforall #endracism #unity #fyp
🚨🇮🇷 A new missile-armed fast attack boat, the "27 Rajab," has been unveiled by Iran's IRGC in Tehran's Revolution Square.
The Ballad for Erika is beyond hilarious, it is genius social commentary masquerading as a Top10 diss track 🔥👊🏻
Finally, a completely non-controversial television sponsor we can all agree on! Leave it to Tenna to get everyone on the same side. It's a new episode of #Deltarune! #streamersupport #youtube @gamingnews-rt.bsky.social @tobyfox.undertale.com @undertale.com #Undertale #silly buff.ly/FbPzyI2
Nominiert für den Deutschen Sachbuchpreis 2025: Martina Heßler – Sisyphos im Maschinenraum. Eine Geschichte der Fehlbarkeit von Mensch und Technologie (C.H. Beck) #DSP25
Ah yes! I see the WORMS are already setting their DINNER TABLE in anticipation.. How quaint!
Beige computers, glossy office ads, golden ties, and the remains of an ironic business rebrand. Shader Development Studio takes us inside the making of Shader.se, a scroll-driven 3D experience shaped by corporate satire, 80s business tech & seamless scene transitions: tympanus.net/codrops/2026...
“I’m not a racist but…” 🙄 #BadBunny #SuperBowl #Racist #FolkMusic #OriginalSong #protest #ICE #SocialCommentary #FactCheck
The January lamb “oppsy daisy” gets turned out as it’s not a wet day (for the moment). Also known as Cinda-fecken-rella by the farm sitter while I was away
I’ve added a special Moon Room to my dark fantasy game, Crimson Rest. It can be accessed through Moon Doors that appear randomly throughout the castle. What do you think? ➡️ Wishlist 'Crimson Rest' on Steam: store.steampowered.com/app/3993140 #darkfantasy #indiedev #gamedev #psx #godot
In the next episode of The Current Podcast, TXST President Kelly Damphousse talks with artist and activist Matthew Mazzotta about the intersection of public art and activism, and the importance of public art on university campuses. 🎧 Apple: ow.ly/s18R50WnNJz 🎧 Spotify: ow.ly/mhjF50WnNJy
Hey MAGA, you still pay taxes, right? And tariffs, high prices at the pump, grocery story, so on?
[20260602] X 수민이와 쉼 없이 🛏 더 달려 🏃♂️💦 https://www.tiktok.com/@triplescosmos/video/7646732825969872146?is_from_webapp=1&sender_device=pc #tripleS #트리플에스 #SooMin #수민 #Baby_Flower
Ottawa's QB Room 👀👀 Jake Maier and Bryson Barnes were putting on a show in preseason Week 2.
Donetsk Oblast — 35 km from the front line. Traffic on the occupied Horlivka highway was suspended after a Russian military logistics transport vehicle was struck by a Ukrainian medium-range kamikaze drone.
Creo que a este pavo todavía le falta un poco más de tiempo en el horno. El de Pedro Sánchez ya está listo, ¡pero este necesita más paciencia!
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
Senador Iván Flores La verdad es que la actitud del ministro Quiroz ha sido desafiante e irrespetuosa y con eso no gana nada. Imponer desde una supuesta superioridad no contribuye.