EURORDIS-Rare Diseases Europe
@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
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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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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
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...
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
#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 #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
✨ 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
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!
Better access. Better support. Better outcomes. Key takeaways from this morning's #ECRD2026 parallel sessions 👇
#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
⭕HOMME ARMÉ DE GAZ POIVRE ET DE HACHE AGRESSE DES MUSULMANS EN TRAIN DE PRIER LE FAJR AU #CANADA. #Eye-On-Palestine
🏥🇷🇺 Ukraine Russia War | Russia Reports Medical Care at Starobilsk Hospital After Ukrainian Attack | RCF NSFW & Premium Content: https://patreon.com/RealCombatFootage Odysee: https://odysee.com/@RCF #RealCombatFootage #RCF #War #Military #WorldNews #BreakingNews #UkraineRussiaWar
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Now streaming the development of my Colony Sim + RPG game! ⚒️🤖⚔️ Some click+drag performance fixes and visual implementation today! And, if time permits, I'll do some other minor tweaks and changes! Come join me! www.twitch.tv/sorcerystory #gamedev #indiedev #godotengine
National speed running economic crash & private tech displacement in NZ: "We're going to bring AI and digitisation to the public sector like private businesses are doing"
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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.”
VOLKER: Trump looks at Russia's war against Ukraine as a matter of who's bigger, who has power. Russia's bigger country, so Russia's going to win. Ukraine should give something up and make peace. Trump can't understand why they're not doing this. And he is making a huge mistake.
BIRDMAN PUT ON THE SPOT AT CHURCH AFTER CRITICS ACCUSE HIS MUSIC OF NEGATIVELY INFLUENCING THE YOUTH”
Sam Curran's on the charge 👊 Surrey need 48 runs from 30 balls to win at Lord's. 🩵| #VitalityBlast
🇨🇳 🇷🇺 Vladimir #Putin is visiting #Russia's most important partner since the start of the war in #Ukraine: #China. The two leaders are mainly set to discuss energy and security. The visit comes less than a week after #US President Donald #Trump's visit to #Xi Jinping.
#engineering #robot #professor #ai #stem meet me this summer in Atlanta At OURCHIVES Condidence Camp 7/8-7/11 NoireSTEMinist.com
📊 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
Democratic congressmen and candidates call Gov Abbott’s call to redraw congressional boundaries mid-decade a “brazen racist power grab,” intended only to serve President Trump’s interests. Four districts are being targeted statewide, but three are in Houston. #TxLege
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
Today, 27 May on Cape Town News... 🔥 A brazen broad daylight café shooting shocks Table View 🏫 School placement results open across the Western Cape 💸 Cape Town budget changes return after the tariff court ruling 📍 Catch the full story today at 3 PM!
Two Palestinian truck drivers were killed by Israeli forces while they were delivering humanitarian aid from the Karm Abu Salem crossing.
AB separatists: Why care about a small minority of AB Separatists? Part one of two
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Imran Khan has committed no crime. He is a hostage in the illegal custody of a military dictator who is torturing him with complete isolation in solitary confinement, denying him proper medical care. #خان_کے_سائے_سے_بھی_خوف