ERDERA
@erdera
💡 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
2
Likes
1
Reposts
0
Replies
More from ERDERA
-
🌍 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...
5 -
💡 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...
3 -
🌍 European Reference Networks (#ERNs) connect rare disease experts across Europe. Within #ERDERA, ERNs help bring clinicians, researchers & patients together to share knowledge, a...
2 -
🔬 How do we improve diagnosis for people with undiagnosed conditions? 📅 30 April | #UndiagnosedDay 2026 🌟 Expert & lived‑experience panellists 👉 View the agenda and register: h...
2 -
💡 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...
2
🌍 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
🌍 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
🚀 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
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
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
🚀 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!
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
💡 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
OKC has Hartenstein go with high P&R for Jalen Williams. It's a tiny adjustment but a solid one from OKC and Hartenstein. Wemby stays in a drop, notice Williams wait for the defense to recover. Hartenstein doesn't go Gortat instead gets another piece of Harper, pullup there.
Only 2 weeks left to apply for the 2026 AWIS scholarship cycle. Visit https://awis.org/scholarships/ to learn more. Applications close February 28. #WomenInSTEM #AWISscholarships
Big announcement: we are expanding access to youth jobs across King County government! Today we are launching YouthWorks, a new web app that connects people ages 16 to 24 with paid internships and volunteer opportunities. Learn more and apply at kcyouthworks.org
Some Canadians just got paid from a $500-million settlement in a lawsuit that accused #Loblaw of overcharging customers for bread, but the payouts are leading to humorous comments online. #Canada nowtoronto.com/news/canadia...
The HARDEST part about ALL of this is when people do NOT take the time to SEE what‘s actually being presented instead of PROJECTING THEIR <fill in the blank> onto a situation they may not even be a part of #minneapolis CONTINUES to judge based on prejudice instead of evidence Things NEED to CHANGE
She lied, she cheated, she stole... now she's being shuffled to some other token position she's not qualified for and being replaced by another unqualified sycophant. What the hell is happening here? #kristinoem #markwaynemullin #dhs #shieldoftheamericas #unqualified
Call it out! There has never been a more critical time to expose the powerful forces deluging you with disinformation and toxic messaging while posing as journalism and news! “Truth Lies & Media” is live!🎙️ On Apple & Spotify🍎 Promo Match Frame Editing
We Didn’t Realise How Much People Love This Event | Listen UP Episode 3 - The Recovery Collective - Available Now: EPISODE 3 - lk2.app/luep3 A recovery-focused music event that brings joy and transforms lives. The Recovery Collective explains in Episode 3 of Listen UP.
Are you ready to have your world turned upside down by an ex-UAP Task Force analyst?! From the fields of Missouri to the heart of the intelligence community, Sarah Gamm’s journey is a truly cosmic adventure. Part 1 out now: youtu.be/HTbrevqjWgM #UAP #Astrophysics
The Trump administration says it will allow the Stonewall National Monument in New York to fly a rainbow Pride flag once again.
Thank you BlueStorm. I appreciate the mention. 😊 @khr5.bsky.social @fireeyebooks.bsky.social @brutalrealist.bsky.social @arlie.bsky.social @kenzie35.bsky.social @mt-nestor.bsky.social @jaybird54.bsky.social @bluethrunthru.bsky.social @bluestormcomin1.bsky.social @moondeer66.bsky.social 💙
It's cold here at the Sixville Mall Theatre and we needed a little luck and Sunshine. Get us where you get your podcasts as Sixville Mall Entertainment or Double Feature Creatures.
This Friday we’re launching the #pointandclick adventure Mystery of Silence by Making Enemies on iOS and Android in a premium format: no ads, no advertising, and no microtransactions. Pre-order it now on the App Store and Google Play! #mobilegames #indiegames
Imagine being able to hear their voice again💙 Stories, memories, little moments, advice, inside jokes… preserved in a way future generations can still experience. Grief and technology are evolving in such a fascinating way. #forevermore #grief #memory #legacy #deathdoula@Forevermore
𝐀𝐫𝐞 𝐲𝐨𝐮 𝐦𝐚𝐤𝐢𝐧𝐠 𝐭𝐡𝐢𝐬 𝟏 𝐦𝐢𝐬𝐭𝐚𝐤𝐞 𝐨𝐧 𝐬𝐨𝐜𝐢𝐚𝐥 𝐦𝐞𝐝𝐢𝐚? 👀 Some business owners are and it’s costing them reach, engagement, and trust. #SocialMediaForBusiness #SocialMediaTips
Checking on my vegetable garden and herb We had a good rain last night and today.Im getting some flowers on my Roma tomato plants. And my herb garden its getting there The spearmint smells wonderful,I planted basil,lemon thyme,and spearmint, planted rosemary that's on my porch #gardensky #organic
I don’t know if this is just because I’ve been reading him M. Night Shyamalan scripts for bedtime but I feel like every conversation with my toddler has a twist ending.
The little yellow tin that became a South African legend ⭐🇿🇦 #aromat https://go.grape-place.com/YczXWq
Balozi Speaks: Every Sunday! TV47 - 8pm! Join us and learn more about the EU and its Member States! 🇪🇺 🇰🇪 #EUKenya50 #BaloziSpeaks
ALL our Oils are 100% EO fragrances. These oils are perfect for use in cars, diffusers, humidifiers, homes, offices, ect. GREAT FOR SMOKERS using a humidifier, guarantee to kill smoke scent. meltsbysusanstore.etsy.com ebay.com/str/susancan...
Influence doesn’t announce itself. It moves through stories. WHY SCRIPTED listens closely. #WhyScripted #Ideas #Narratives #Media
Reporter: Ken Paxton is calling you 'Talafreako.' Talarico: He just released child rapist Adam Hoffman from jail after his wealthy atty friends got involved. Hoffman was supposed to serve 25 years to life. He served less than a month. The Epstein class has no place in Texas.
Yes we thought you might be able to watch on the plane. Well tomorrow is going to be big - argh I don't think I can take it. 🤣😂
“I had zero before and now I have two. It's an unbelievable feeling.” 🏆🏆 Marquinhos reflects on going from never winning the UCL to becoming a back-to-back champion with PSG ✨
Day 2 at RubyConf is Community Day 🤝 Three hands-on workshops running at 10:30 AM — gem security, DragonRuby, and building iPhone apps in Ruby. Las Vegas. ti.to/rubyconf/rub...
"Jeff Lenberg, a computer technologist implicated in the breaches in Pennsylvania, Michigan, and Georgia, made a video demonstrating how to compromise vote totals with software allegedly obtained in the breaches." #Resistance #WeAreTheFlood
This is just the beginning. There is so much more to explore. Check the link to find itineraries to jumpstart your summer travel bucket list to Santa Fe. www.santafe.org/visiting-san... #thecitydifferent #visitsantafe #santafemargaritatrail #travelbucketlist
First Yoshi game since Tetris Attack to realize how good Yoshi’s Island enemy design was. Love these little guys.
New episode of “The Twelve” w/ @aeroastrofc.bsky.social, @trebtracy.bsky.social, & @thombomb816.bsky.social is out. 2025/26 WSL Review Part One YT: youtu.be/PI7t6I55HOY?... Spotify: open.spotify.com/episode/5lQX... Apple Podcast: podcasts.apple.com/us/podcast/t...
this little boy ran across a room to hug his anaesthesiologist 💙 Happy #worldanaesthesiaday to those working in the background of every critical moment. Next time you're counting backwards from 10? someone incredible has your back ✨
Tell me your experience. #mudrat #halfwayhauntedllc #seeyouintheshadows #musictrigger #paranormal
“Else Marie Pade (b. 1924, d. 2016), a path-maker of musique concrète and European electronic music. Over a career spanning multiple decades, Pade approached sound as a medium of electronically generated tunes, exploring intensities, multitudes, and dissonance.” www.kw-berlin.de/en/exhibitio...
Spaghetti & Meatballs! This is the real thing, guys! It's so important to incorporate your favorite meals into your healthy lifestyle. I know that I have to, or there is no way it will be sustainable! This is a forever life. 🍽️ #fitover50 #highprotein #lowcalorie #cooking #foodie #foodsky
5 heart health metrics worth knowing in 2026. Because prevention starts with knowing what actually matters. Read more: https://www.cardiolucent.com/point-of-view #HeartHealth #PreventiveCardiology #CardiologyCare #LongevityHealth #ExecutiveHealth #ConciergeCardiology #HealthMetrics #Cardiolucent
How can we develop guidelines and trainings for heat pump installers? SKILLSAFE-EU wants to develop a guideline to help manufacturers and installers design, store, transport, install and dispose heat pumps containing R290 (Propane) refrigerant for residential applications. 🔗 ehpa.org/projects-hub/
Video shows emergency crews working to rescue eight people who were left dangling midair on a roller coaster after it malfunctioned at Pleasure Pier in Galveston, Texas. The incident was a terrifying experience for riders at a Texas amusement park on Thursday. jpeg.ly/stW4A
Serhiy "Flash", an advisor to the Minister of Defense, noted that current intelligence tracks the movement of troops and the construction of fortifications and roads in Belarus, adding that this is no secret.
This season has been Rocky. But is the future brighter? 0.0% playoff odds. Record 22-38. First to hit zero on basechaser.com this season. New front office. Holliday & Condon in MLB Top 100. Veen adding 40+ lbs. Six straight top-10 draft picks. The climb has started. basechaser.com/rockies-rebu...