ERDERA
@erdera
Thatโs a wrap on an inspiring #WODC2025! ๐ The #ERDERA team joined panels, sparked valuable exchanges, and connected with many eager to collaborate and contribute to advancing #RareDisease research in Europe. ๐ฌ Letโs keep the momentum going! ๐ช #OrphanDrugs #WODC
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๐ 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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๐ก New ERDERA Knowledge Pill! What are National Mirror Groups (NMGs) and how do they strengthen collaboration in the rare disease ecosystem? ๐ Discover their role within the #ERDE...
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๐ 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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๐ฌ How do we improve diagnosis for people with undiagnosed conditions? ๐ 30 April | #UndiagnosedDay 2026 ๐ Expert & livedโexperience panellists ๐ View the agenda and register: h...
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๐ก New ERDERA Knowledge Pill! What are ATMPs and how are they changing how we think about treatment, especially for people living with rare diseases? ๐ Learn more: https://loom.ly...
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Thatโs a wrap on the 2nd International CRN Conference for Rare Diseases! ๐Thank you to all who joined onsite and online โ your contributions strengthen collaboration and evidence generation across the rare disease community ๐ค Highlights here: https://loom.ly/XQCqGOg #ERDERA #RareDiseases
๐ก New ERDERA Knowledge Pill! What are National Mirror Groups (NMGs) and how do they strengthen collaboration in the rare disease ecosystem? ๐ Discover their role within the #ERDERA: https://loom.ly/TvHDtK8 #RareDiseases #EUResearch #HealthResearch
๐ Want to lead the way in #RareDisease research? Subscribe to #ERDERAโs newsletter! ๐ฉ โ Big news first โ Expert tips & tools โ Breakthroughs that matter โ Community highlights Subscribe at ๐ https://loom.ly/NxMGydc
๐ก New ERDERA Knowledge Pill! What are ATMPs and how are they changing how we think about treatment, especially for people living with rare diseases? ๐ Learn more: https://loom.ly/pjOwax0 #ATMPs #AdvancedTherapies #RareDiseases #ERDERA
๐ Not long to go for the 2nd International Conference on Clinical Research Networks! ๐ A key global event on clinical research networks, with great speakers & chairs lined up! Full programme & registration๐ https://loom.ly/1fhf8zI ๐จ Limited in-person spots available!
๐ฌ Missed the ERDERA newsletter? Catch up on the latest updates and highlights from across ERDERA and the rare disease research community. Read it here ๐ https://loom.ly/7VjkRXs ๐ฉ Donโt miss the next issue, subscribe now: https://loom.ly/TFRXEBY #ERDERA #RareDiseases
๐ 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 ๐ #RareDiseases #Advocacy #EUHealth #EUInnovation
๐ก What is PPIE โ 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. ๐ Find out more: https://loom.ly/FWzBQpg #RareDiseases
๐ฌ How do we improve diagnosis for people with undiagnosed conditions? ๐ 30 April | #UndiagnosedDay 2026 ๐ Expert & livedโexperience panellists ๐ View the agenda and register: https://loom.ly/DbXzw0E #RareDiseases #Diagnosis #HealthPolicy
Patients are the glue holding the whole system togetherโwithout them, it simply wouldnโt exist. ๐ ERDERA speaks with Bojana Mirosavljevic, advocate behind Zoyaโs Law in Serbia, on why patient voices must shape research & policy from day one. ๐ Read more: https://loom.ly/vxcS4lo
Most all other ROCKY HORROR shows are sold out for this coming weekend, so weโre adding an early Saturday show at 5:30pm, for those of you who wanna PARTY but also be in bed at a reasonable hour. www.brownpapertickets.com/event/6732127
#VisibilityBrigade #usa #democracy #mayday #ballroom @maddow.bsky.social #rights #dday #mothersday #mom @visibilitybrigade.bsky.social @rosaliewong.bsky.social @jesscraven101.bsky.social @emmatk.bsky.social @hcrichardson.bsky.social #jimcrow #women #war #boycott #fascism #billionaires #vote
First Past the Post keeps promising stability and delivering chaos. Governments are elected on a minority of the vote. They impose their agenda without listening to or negotiating with anyone. They fail and collapse. Rinse and repeat. There is a better way. It's time for PR.
What does the future of aid actually look like? @daveainsworth.bsky.social is reporting from the Global Partnerships Conference, a convening led by the FCDO to rethink global development. The conversations so far focus on the sectorโs most pressing challenge, including debt restructuring.
GOOD NEWS: 59 countries have agreed to develop national roadmaps for phasing out fossil fuels after attending the first ever conference aimed at phasing out fossil fuels in Santa Marta, Colombia.
Here are the results from the 2026 Derry Feis on Tuesday, April 7. For An Ceol, Classical Music and Speech and Drama. Well done to everyone who took part!
New pedestrian crossing at Timber Quay and active travel part of Magee expansion plans www.derryjournal.com/news/people/...
Tim & Eric answer a fan question about I Sit Down When I Pee! ๐ฝ Get access to hundreds of hours of extra content with a FREE 7-day trial to OFFICE HOURS+ at patreon.com/officehourslive!
After that hellacious main event between AEW World Champion Darby Allin & Speedball Mike Bailey, TNT Champion Kevin Knight has words encouragement for them both! Watch #AEWCollision LIVE on TBS & HBO Max
Elissa Slotkin: "Trump has conducted military operations in 9 places in 15 months. That's more than any President in history. He's shown that he is willing to use force. You can have a debate on if that's a good thing or a bad thing."
Do you have a favorite Johnny Cash song? Let us know in the comments! Some days, the music flows effortlessly. Other days, it takes patience, persistence, and a deep breath before the right note or lyric finds its place.
Jeff Nuccatelli questions one of the most repeated assumptions in UFO lore: if these objects are really so concerned with nuclear weapons, why did they let us use them? @tobehumanshow.bsky.socialย ย https://f.mtr.cool/cvbzfwhkeb
WEEKLY UPDATE: Feds announced 15 more have been charged with fraud in Minnesota; Feeding Our Future ringleader Aimee Bock was sentenced to 41 years; arrests were made in connection to the death of an Army veteran, and more.
Your Flag Decal ( #johnprine cover) #nokings 3-28-26 @havalinapdx.bsky.social @charluminous.bsky.social
TKD man gets a warning for falling down after the kick is blocked. He's been doing it a bit previous to this.
$13M AIPAC Money In The Wild Wesley Bell has received massive financial backing tied to pro-Israel lobbying interests. If public officials are taking millions from powerful interest groups, then public scrutiny is just basic accountability. Support his challenger Cori Bush in Missouri!
Allegedly, Iran's Popular Mobilization Forces tightened security at the Arar border crossing with Saudi Arabia, and images emerged from a seized ship in the Persian Gulf. #Iraq #SaudiArabia #Iran https://osint-signals.com/summary/698
Breaking: Kim Jong Un picks his 13-year-old daughter Kim Ju-ae as North Koreaโs next leader ๐ญ Bro really said โnepotism runs in the familyโ โ literally, itโs been running since 1948. Fourth-generation succession, first female leader, and sheโs not even old enough to drive. Meanwhile most
Captain Szilveszter Pรกlinkรกs, Hungarian Army officer: "What causes me difficulty is understanding which side this government is choosing. It portrays Ukraine as an enemy, while in reality, in this military conflict, Ukraine is a victim, because Russia attacked Ukraine. This is common knowledge."
Family and child protection lawyer Bobbi Olsen talks about the legal systems in Canada which handle issues of domestic and family violence. The two explore what is working and what needs to be improved. #gbv
๐๏ธ New EdUp Canada Podcast! Michael Sangster speaks with Larissa Bezo on Canadaโs international education system, how rapid policy changes are shaping global perception, and what it will take to rebuild trust through long-term thinking and collaboration. ๐ buff.ly/iuoa1i3 #TheEdUpExperience #NACC
Fox guest Keith Kellogg on Iran: โRomans โฆ went down to Carthage, they burned it to the ground, they took 50,000 prisoners and they finished the job. There was no more Carthage, and in fact they didnโt cause them problems again in the future. We ought to do that to the Iranians as well.โ
Yes, I can't imagine global leaders agreeing to creating a ministry that looks after the rights of future generations. But I do believe we'll see eco-activists (which our media will call eco-terrorists), taking ever more drastic steps to punish the grossest climate abusers.
Is it okay to wrestle with the Bible? Yes. It always has been. Faith thatโs never questioned isnโt faith - itโs fear. ๐๏ธ Rev. @brandanrobertson.bsky.social (minister in NY, PHD candidate, author of Queer & Christian) is dropping by The Sacred Slope! #deconstruction #lgbtq #progressivechristianity
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Good Afternoon And Good Evening From The Legend One And Only G.6. Mindset President Fox Happy Hump Day And Happy Wednesday Enjoy The Rest Of Your Day Mutch Love From G.6. FOX GOD DID G.6. ๐๐๐
Craving a heart-pounding read? ๐ Dive into Chuck Morgan's thrillers for an adrenaline rush! ๐ต๏ธโโ๏ธโจ Who's your favorite crime hero? ๐ค๐ http://dlvr.it/TSnndz
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๐ฅ Russia: Saratov Oil Refinery struck by a swarm of Ukrainian drones. Annual refining capacity: 7 million tons.
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Can you guess what Patricia Alvarez is training for? ๐ Hint: it's a team sport ๐ Ps: The answer will be revealed in 24 hours, do not check her profile ๐ซต ๐น: @patrialvareez #Olympics
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#1 SONG THIS DAY IN HISTORY! May 26th, 1967 "Groovin" by the Young Rascals SONG LINK: youtu.be/4JIq8Zn0AJE?... @djraysmusic.com