ERDERA
@erdera
💡 What is PPIE — and why is it such a central concept in ERDERA? Our latest Knowledge Pill explores Patient and Public Involvement and Engagement (PPIE): what it is, why it matters, who is involved, and how #ERDERA puts it into practice. 🔗 Find out more: https://loom.ly/FWzBQpg #RareDiseases
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🌍 Today is #RareDiseaseDay! ERDERA, the European Rare Diseases Research Alliance, joins the campaign to raise awareness for the 300M people living with a rare disease, and advocat...
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💡 New ERDERA Knowledge Pill! What are National Mirror Groups (NMGs) and how do they strengthen collaboration in the rare disease ecosystem? 🔎 Discover their role within the #ERDE...
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🌍 European Reference Networks (#ERNs) connect rare disease experts across Europe. Within #ERDERA, ERNs help bring clinicians, researchers & patients together to share knowledge, a...
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🔬 How do we improve diagnosis for people with undiagnosed conditions? 📅 30 April | #UndiagnosedDay 2026 🌟 Expert & lived‑experience panellists 👉 View the agenda and register: h...
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💡 New ERDERA Knowledge Pill! What are ATMPs and how are they changing how we think about treatment, especially for people living with rare diseases? 🔎 Learn more: https://loom.ly...
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That’s a wrap on an inspiring #WODC2025! 🌍 The #ERDERA team joined panels, sparked valuable exchanges, and connected with many eager to collaborate and contribute to advancing #RareDisease research in Europe. 💬 Let’s keep the momentum going! 💪 #OrphanDrugs #WODC
📬 Missed the ERDERA newsletter? Catch up on the latest updates and highlights from across ERDERA and the rare disease research community. Read it here 👉 https://loom.ly/7VjkRXs 📩 Don’t miss the next issue, subscribe now: https://loom.ly/TFRXEBY #ERDERA #RareDiseases
💡 New ERDERA Knowledge Pill! What are ATMPs and how are they changing how we think about treatment, especially for people living with rare diseases? 🔎 Learn more: https://loom.ly/pjOwax0 #ATMPs #AdvancedTherapies #RareDiseases #ERDERA
🌍 European Reference Networks (#ERNs) connect rare disease experts across Europe. Within #ERDERA, ERNs help bring clinicians, researchers & patients together to share knowledge, advance research and improve care where it’s needed most. Expertise, connected. 💙 #RareDiseases
💡 New ERDERA Knowledge Pill! What are National Mirror Groups (NMGs) and how do they strengthen collaboration in the rare disease ecosystem? 🔎 Discover their role within the #ERDERA: https://loom.ly/TvHDtK8 #RareDiseases #EUResearch #HealthResearch
That’s a wrap on the 2nd International CRN Conference for Rare Diseases! 🎉Thank you to all who joined onsite and online — your contributions strengthen collaboration and evidence generation across the rare disease community 🤝 Highlights here: https://loom.ly/XQCqGOg #ERDERA #RareDiseases
🌍 Today is #RareDiseaseDay! ERDERA, the European Rare Diseases Research Alliance, joins the campaign to raise awareness for the 300M people living with a rare disease, and advocate for better care, research, and collaboration 🚀 #RareDiseases #Advocacy #EUHealth #EUInnovation
🔬 How do we improve diagnosis for people with undiagnosed conditions? 📅 30 April | #UndiagnosedDay 2026 🌟 Expert & lived‑experience panellists 👉 View the agenda and register: https://loom.ly/DbXzw0E #RareDiseases #Diagnosis #HealthPolicy
🚀 Not long to go for the 2nd International Conference on Clinical Research Networks! 🚀 A key global event on clinical research networks, with great speakers & chairs lined up! Full programme & registration👉 https://loom.ly/1fhf8zI 🚨 Limited in-person spots available!
🚀 Want to lead the way in #RareDisease research? Subscribe to #ERDERA’s newsletter! 📩 ✅ Big news first ✅ Expert tips & tools ✅ Breakthroughs that matter ✅ Community highlights Subscribe at 👉 https://loom.ly/NxMGydc
Happening now: Activists are blocking the entrance to Con Edison headquarters in Manhattan to call on Mayor Mamdani & City Council to pass Gas Free NYC, restrict ConEd from hiking rates, & to upgrade heating systems in 1 & 2-family homes to lower rates. @sunrisemvmt.bsky.social @xrnyc.bsky.social
Grateful for the quiet hours spent in Carmel Highlands during my birthday week. The ocean does what it always does — widens the horizon, softens the noise, reminds me that perspective is all. Another year. More depth. More clarity. More gratitude. #EveRichards #CarmelHighlands #OceanAir
The US Constitution is 7,500 words. You could read it in under an hour. He apparently couldn't be bothered. Or more likely can't read. New piece. Trump vs the Constitution. 🔗 open.substack.com/pub/austinsi... #Constitution #Trump #Emoluments #WarPowers
With a stray shower still possible today, you may want to hold on to that umbrella. But you won't be needing it after today. Here is the latest from the Valley Storm Team Weather Center.
“A stain on our democracy”: NAACP general counsel Kristen Clarke describes Trump’s efforts to rig the midterm elections in the South, and what her organization is doing to fight back.
#vernon #tess #explore #fyp #BreakingNewsUSA Full story: https://jqjo.com/2026-05-10/us/Lifestyle/ch/bs/弗农·凯和特丝·戴利结束22年婚姻,震惊宣布分手/1271904
🇨🇺🇺🇸 Cuba’s path forward? Lillian Guerra tells #F24Debate the Catholic Church could play a pivotal role in Havana’s democratic transition ➡️ https://go.france24.com/6nYt
🦈 El tiburón necesita mantenerse en movimiento constante. 🌊 Debe nadar para garantizar el flujo de agua a través de sus branquias y poder respirar. En sus periodos de descanso, algunas especies reducen la velocidad y aprovechan las corrientes marinas para dejarse llevar en un estado de letargo.
Within Me Are #Cosmos From #Sandman #Comic [Child of Night And Time] Cosmos of Souls The New World Rabbit With Crown (Google) Rabbit on [Moon My Birth] (Predates) #giantimpacthypothesis INSPIRATION From #FireForce Ending ( A WORLD EMPTY NO ABILITIES NO POWERS ..
Why aren't we trying to prevent pregnancy, instead of offering abortion?
“You’re about to see one of the biggest brand failures in history.” @profgalloway.com predicts Ferrari's new electric car will go down in history... for all the wrong reasons.
Great news! America doesn’t need the Strait of Hormuz at all!!!! Nothing to worry about!
O governador de Alagoas, Paulo Dantas (MDB), participou de um sorteio de transferências via Pix durante um evento de comemoração do Dia das Mães em Rio Largo, cidade da Região Metropolitana de Maceió. 📲Leia mais na #Folha: mla.bs/e907febe 📝João Pedro Pitombo 🎦Reprodução
"Among the slain residents was a Palestinian woman who happened to be passing by the building; she had been purchasing Eid clothing for her late brother’s children when the missiles struck. Her funeral took place earlier at the Al‑Ahli Cemetery."
Hornets' notable road wins since the New Year: W at Celtics by 29 (tonight) W at Rockets by 10 W at Magic by 27 W at Nuggets by 23 W at Lakers by 18 W at Thunder by 27 Charlotte has won 10 straight road games.
Each year, the ASA Charitable Foundation's Global Scholars Program helps young anesthesiologists from under-resourced countries attend our annual meeting. Hear more from ASA President Dr. Patrick Giam, and find out how you can help sponsor a global scholar: www.asahq.org/charity/prog...
“The release of the Epstein files are more important than ever after America’s attack on Iran. Epstein was likely an Israeli intelligence operative, collecting blackmail on political & corporate leaders. Who in the White House and in Congress are compromised?” www.instagram.com/reel/DVT11fc...
It Matters Where You Are (A Slowdive Music Video) #slowdive #shoegaze #musicvideo #edit #rock #indie #dreamcore #internetcore #liminal #cybercore #heartbreak #lonely
Come join me with Pokemon Legends: Z-A Saturday and Sunday 4a-8a central time. www.twitch.tv/gaming_with_... #pokemonlegendsza #twitchtv #twitchstreamer #pokemonstreamer #gamingwithgeekgeek #twitchaffilliate #nintendoswitch #geekgeek #pokemoncommunity #pokemon #gottacatchthemall #kalos
Some Guardian Druids decided to have some fun and run a Mythic Plus 20 dungeon all on their lonesome. No Healers, no DPS, just a bunch of bears on the loose. Apparently Blizzard found out and immediately nerfed Guardian Druids. So.
😍 "Es que son mágicas las dos". 🎶 Es la sensación que dejaron Miriam Cantero y La Kaíta tras actuar en Badajoz. ✔️ Se convirtieron anoche en protagonistas de una nueva edición de 'Flamenco en la Plaza Alta en Badajoz'. #lakaíta #miriamcantero #badajoz #flamenco https://acortar.link/JTesOs
We’re diving deep into the SOTU aftermath, those wild new Epstein revelations, and the rise of "stenographer journalism." 📝 Here is my take on Gov. Abigail Spanberger’s address last night. 🏛️ Full episode in the comments! 👇 #SOTU2026 #EpsteinFiles #PoliticsToday #Spanberger
For three years, EarthCam documented @suffolkbuild construction of @10worldtrade. EarthCam documented the rise of this mixed-use destination featuring flexible offices, research space, dining, and fitness amenities. Watch the full time-lapse on our YouTube channel.
@ladyjulia1997.bsky.social Vor 3 Jahren hat alles angefangen, als ich mit meinem Chef nach Afrika geflogen bin und heimlich meine Herrin gebettelt habe, dass Sie mich in Ihren Stall aufgenommen hat. Endlich hatte Grunzi sein Zuhause gefunden, nachdem ihn seine Lady erhört hatte und aufgenommen 🙏
This reminds me of when I worked on the covid unit and this NP was refusing to come to the unit to look at this guy I was concerned about. I wanted to fight her. I had to act like an whole asshole to get him seen 🙄
Real person with a script. OR a generated face with a caption. Both are possible now. That face might not exist. That office might be generated. That caption was definitely written by a committee. AI can make a fake accounts now. That’s the point. Your outrage is the product. Don’t engage.
In Sailor V’s presence, Sailor Moon’s tiara changes. After Zoisite and Tuxedo Mask retreats, V reveals that she’s been watching them through the arcade game, and reveals her civilian form as Minako Aino. <S1ep8 (“Act 8: Minako - Sailor V”)> #SailorMoonCrystal
To my LGBTQ+ friends & to those I’ve never met. Thank you for your courage & contributions to making the world a more compassionate place. I stand with you today & every day. You deserve acceptance, dignity, equality & joy. Happy Pride Month 🏳️🌈❤️ #HappyPrideMonth #LoveIsLove #Equality #SheShed
🗓 This Saturday 6th December is Small Business Saturday. 🚗 There will be no charge to park in Council-run car parks across North East Hampshire all day. 🎁 This is a perfect opportunity to visit some local businesses, especially if you have some Christmas shopping to do.
When a doctor says the system is a disaster, listen. Tens of millions uninsured. Millions more can’t afford basic care. Yet the GOP keeps writing blank checks for war. Today’s war powers vote is a chance to demand better. Call your rep. We deserve healthcare, not endless wars #FundHealthcareNotWar
You're telling me Chinese Nationals were fraudulently marrying U.S. military members trying to get on-base access? Actually??
WEREWOLVES are rad! Shirts, stickers & more. Shop my store: volpedesign.dashery.com #shirts #shirtdesign #horrormovies #werewolf Music by @davidjosephwesley.bsky.social
Happy Fish Fry Friday! This week my team and I visited a bunch of fish fries all over the area, make sure you check them all out this Lenten season! 🐟🍟🍴
Tweak Rust error messages instead of building a whole new language. #rust #programming #ai
Senator Jon Ossoff calls Trump a failed President and a national disgrace. Honestly, I can’t even imagine the Senate without Jon. Georgia, you know what to do come November.
[ 🇷🇺 RUSSIE | 🇵🇸 PALESTINE ] 🔸 « Actuellement, sur fond des événements se déroulant en Iran et dans le détroit d’Ormuz, nous avons oublié la tragédie de la Palestine, mais elle est toujours là. La Russie estime que la solution fondamentale à cette question est [La suite en réponse ⬇️]
My documentary - God Next Door - is being repeated tomorrow morning. I’d love it if you listened along with me. BBC Radio 4 / 9.30am.