ERDERA
@erdera
🔬 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
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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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💡 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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💡 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 matter...
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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 advocate for better care, research, and collaboration 🚀 #RareDiseases #Advocacy #EUHealth #EUInnovation
🌍 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
💡 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
Patients are the glue holding the whole system together—without them, it simply wouldn’t exist. 👉 ERDERA speaks with Bojana Mirosavljevic, advocate behind Zoya’s Law in Serbia, on why patient voices must shape research & policy from day one. 🔗 Read more: https://loom.ly/vxcS4lo
🚀 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!
📬 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 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 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
💡 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
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
Sri Lanka arrests more than 260 foreigners over Cyberscams! #news #worldnews #srilanka #cyberscams #srilankanews #asia #asianews #cyberscam #scammers
Title: Lustrous Size: 12.5"x16.5"x1.5" Media: Acrylic on wood panel #art #etsy #painting
A new 5-star Amazon review of uplifting friendship novel Three Perfect Gifts 🤩 Now also available in audio! Find out more & listen to a sample here: www.annebrooke.com/threeperfect... #bookreview #friendshipfiction
A massive leak flooded a street in Mexico City, with water gushing as emergency workers were at the scene, video shared on social media showed.
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So excited to finish this cover up for Christina! I love the colors 😍 📍Find me @theprettysisterstudio in Costa Mesa, CA ⚡️To Book YOUR Tattoo⚡️ WrappedInPlasticINK.com Or follow the link in my bio 💫DM me with questions or if you want to talk #tattoos #color #tattoo #tattooartist #orangecounty
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Check out this wild play from Cypress Lake vs. Lehigh in their Spring Football Scrimmage! More: https://www.gulfcoastnewsnow.com/article/hs-spring-football-lehigh-defeats-cypress-lake-40-35-in-spring-football-scrimmage/71391015
Tune-in Tuesday! 📻 😈Evil Goose with Norm gets the party started, before requesTED (get your requests in!!) ✨Today in Goose History: 3/24/23 at The Met in Philly with Brendan 🌇 & Ben brings us Set 2s from June ‘24 ✌️ Keep it Ted 😎 wtedradio.com 🕑EST
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Solid Gold Chicken Dry Puppy Food - W/Real Chicken & Potato - Grain Free & Gluten Free Puppy Dog Food w/Probiotics for Gut Health & Digestion - Healthy Kibble for Puppies - Nutrientboost™ - 3.75 LB 🛒 Check on Amazon: https://www.amazon.com/dp/B0C4134GTW/?tag=sersart2024-20
Highland polling stations are now closed. Thank you to everyone who visited one today to cast their vote and a huge thank you to all the polling station staff. #SPE2026 #HighlandVotes26
🧵 Nový Spotlight 👉 https://aktln.cz/dEuxTk 👈 🔵 Jsou Češi připraveni na krizové situace? Dokázali by přežít 72 hodin bez pomoci, kdyby vše přestalo fungovat? Skupina mladých dokumentaristů to testuje na dobrovolnících v rámci platformy CzeXperiment. Tři lidé […] [Original post on zpravobot.news]
After treating 16,000+ patients, Dr. Ed Lin explains why intentional technology adoption creates better outcomes. Patients don’t care about the tech. They only care about results. Learn how intentional technology adoption drives real practice growth here: https://ow.ly/s39150Z2JHc
While most of our focus is on fixing bugs in the porting of #ArkDefender from #Unity to #Godot, we occasionally take sidebars for easy QoL things. e.g. adding quick info buttons on faction selection. #roguelike #indiedev #spacegame #indiegames #indiegame #IndieGameDev #2dgame
Renee Nicole Good and Alex Pretti deserve justice. Republicans can avoid a shutdown today — by accepting that DHS needs to face accountability. No more blank checks for Kristi Noem and the chaos she’s unleashing on our country! Call (202) 224-3121 to reach congressional offices and be heard.
Leah Culver (@leahculver) says that the joy of software engineering is in chipping away at projects because, over time, you achieve great things. Watch this session in full, recorded live at the Merge, at www.wearedevelopers.com/en/videos/91...
Mapping 735 Epstein Class Billionaires Living Amidst Rising Poverty. thedemlabs.org/2025/12/28/7... “We can either have democracy in this country, or we can have great wealth concentrated in the hands of a few. But we can’t have both." @gailwaldby.bsky.social #EpsteinClass
125 patriots and a handmaiden stood on the corner of Buckner & Garland in Dallas to exercise our 1st A rights. We gather every Sunday, noon-1. Protest supported by The Funky East Dallas Democrats aka The FEDDs, inspired by 50501 organization. Sound on for honks 🚙🚙 ICE OUT NOW!
DRAGON QUEST XII: Beyond Dreams Reveal Trailer A Sneak Peak at the new version of the newest DQ mainline title #DQ #DQ12 #DragonQuest #DragonQuestXII #Games #Anime #Manga
If there's one thing Bill 101 does achieve, its taking away any accountability from the Minister of EDU for his own actions. Liability appears more than 40 times in the bill, a stark change from its predecessor. We deserve to know why accountability is literally being written out with this law.
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Slow enrollment, limited diversity, rising regulatory pressure are slowing down the trial recruitment progress. Industry experts reveal how RWD & advanced tech are transforming every stage of clinical trial ops from feasibility to retention. ow.ly/R9ML50YpefB
🍁 ASSIST | Cloé Lacasse Seattle Reign vs. Utah Royals, NWSL April 26th, 2026 #CanWNT/#CanXNT 🎥 OneSoccer/NWSL
Vous avez aimé la croisière Hantavirus ? Vous allez adorer la croisière gastro 😅 Et si on arrêtait les croisières, nocives pour la planète et, apparemment, pour l’humain aussi ? 🛳️🦠
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Let's GO! Have a great #NoKingsDay 🚫👑everyone, excercise your constitutionally-protected right to assemble, practice peaceful, non-violent protest, and don't forget to wear 💛yellow!💛 #SomervilleNJ #SomersetCountyNJ #centraljersey
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🐺Viele Geschichten umfassen die Klonkriege und Viele Helden Traten aus ihnen hervor🙃 Der Eintritt ist frei allerdings betreten auf eigene Gefahr! www.twitch.tv/silvariusplay #silvariusplay #letsplay #livestream #maythe4thbewithyou
This is bigger than politics. Donald Trump is unfit to serve, and ignoring that reality puts our democracy at risk. Leaders must answer a simple question: will they stand by, or will they act? app.sosha.ai/s/2iGZdVGP
The Christ within is your power! 🔋 #UnityofWestchester #ChristWithin #Power #Unity
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The replacement of the SQA with a new body, Qualifications Scotland, was supposed to address the disjointed transition from the earlier years of secondary school into preparation for qualifications. I asked questions at the education committee about whether this is working in practice.
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A big thank you to the wonderful @chaoticdarco.bsky.social for gifting bits & subs to the channel, and @samisnotdrowning.bsky.social for donating to my Ko-Fi page! Incredibly generous of both of you! 🫶 We return to the world of Spira in FINAL FANTASY X tonight! ✨⚔️ twitch.tv/PullFocus - 8pm BST ⚔️✨
Auf die Frage, was denn beim Extremwetterkongress über Trumps Äußerungen zur globalen Erhitzung gesagt wird....: