Back
navigate with arrow keys

EURORDIS-Rare Diseases Europe

@eurordis

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!

2

Likes

1

Reposts

0

Replies

More from EURORDIS-Rare Diseases Europe

What comes next for rare disease policy in Europe? Today, ahead of #ECRD2026, the rare disease community came together in Prague to advance the European Blueprint for Rare Diseases and help define the priority actions needed by and for over 30 million Europeans.

0 0
EURORDIS-Rare Diseases Europe

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 test. 💭 We look forward to concluding both schools with a final session of joint presentations tomorrow morning!

2 0
EURORDIS-Rare Diseases Europe

✨ 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

2 1
EURORDIS-Rare Diseases Europe

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

0 0
EURORDIS-Rare Diseases Europe

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 affect their lives. Making this a reality requires coordinated #EU action:https://go.eurordis.org/eurordisblueprint

3 0
EURORDIS-Rare Diseases Europe

For Kostiantyn, #RareDiseaseDay’s message More Than You Can Imagine means more access. Living with a rare disease in Ukraine meant navigating not only his condition, but barriers to treatment and support. 🎥 Watch his story!

0 0
EURORDIS-Rare Diseases Europe

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

3 2
EURORDIS-Rare Diseases Europe

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

2 0
EURORDIS-Rare Diseases Europe

🚀 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 more 👉 https://go.eurordis.org/regional-task-force

3 1
EURORDIS-Rare Diseases Europe

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...

1 0
EURORDIS-Rare Diseases Europe

Grant @markhamillofficial.bsky.social TV Show: The Boondocks Episode: Mr. Medicinal Year: 2010 This was a cameo voiceover by Mark Hamill in Adult Swim's The Boondocks. #TheBoondocks #AdultSwim

24 11
The Voice Artist’s Spotlight

🇷🇺🇧🇾“We are absolutely not threatening anyone, but we have nuclear weapons, and we are ready in every possible way to defend our homeland” - Aleksandr Lukashenko President of Belarus

8 4
24Hours Ukraine

I know from my personal experience and conversations in New Jersey: members of the Sandwich Generation are everywhere.     We need support. Conversations like this is where that starts.

56 12
Senator Andy Kim

More good days start with community. This May, CATCH is sharing programs, events, and resources that support mental health for kids, families, and our whole community all month long. #catchiscommunity #MHAM2026 #GoodDaysBuiltTogether

0 0
CATCH, Community Action Together for Children's Health

Spring changes more than the weather. It shifts mood, energy, sleep, and even how people relate to possibility. This piece explores why spring can feel like renewal for some and pressure for others. questionclass.com/what-happens... #questionclass #SpringPsychology #HumanBehavior #SeasonalChange

1 0
questionclass

Ohio Rep Letts joins @cleanairmoms-oh.bsky.social , Dr. @berry_peggyrnmsn and advocates to share the burden that petrochemical pollution has placed on their neighborhoods. Plastic is highly polluting throughout its production, use and incineration. We must act! #BeyondPetrochemicals

5 2
Moms Clean Air Force

Fact Check: 'New York Clean Car Act' Was NOT Signed Into Law Banning Car Washing In New York State #CheckTok #NewYorkCleanCarAct #NewYorkState #CarWashing #FactCheck leadstories.com/hoax-alert/2...

1 0
Lead Stories

Someone catch her, she's gonna steal all the cider #cosplay #brony

0 0
✨Princess Petals Blossom✨

Unlocking The Secrets of Balancing The Chakras: Podcast Episode 4 I am back with the 4th episode titled “Unlocking The Secrets of Balancing The Chakras: Podcast Episode 4” of my podcast Skeletal Leap: A Living Adventure. SKELETAL LEAP, the mind body connection for mind and body healing, is a...

0 0
Laadi Ojas

She's aggressive going after loose balls. My apologies to Azzi's fans, I tried to think of a better way to say that.

1 0
Magnus Lehnsherr

How Prince William and Kate Middleton are ‘upping their game’ after Andrew’s arrest Middleton recently wowed the Italian public with a work trip, her first international visit since her cancer diagnosis.

0 0
Navani Earth

Behind the scenes look at what I am seeing when working at the chroma key wall.

0 0
Craig Verley

The reporter interviewing Tennessee gop as they stroll in to destroy their constituency with unconstitutionally r a c i s t legislature is just priceless! Might as well be clear as the liberty bell about the evil these folks are up to! Shame on TN gop! #tennessee #racism #gop #voterrights #standup

2 1
Pamela Stansberry

#engineering #robot #professor #ai #stem meet me this summer in Atlanta At OURCHIVES Condidence Camp 7/8-7/11 NoireSTEMinist.com

4 3
Dr. Carlotta A. Berry #NoireSTEMinist 🤖

NOOOO... I could have saved him! 😭 #halo #gaming #twitch #fyp #shortsfeed #shorts

0 1
jaychalke

In the next 10 years, having an AI certification will be the new high school diploma. Which means you’re gonna have to bring WAY more to the table. Tune in: https://youtube.com/live/-QzBH1nqa8w?feature=share #theuntraditionalentrepreneur  #futureofwork

1 0
jumingdelmas

US soldier arrested for betting on Maduro capture.

0 0
41NBC/WMGT-TV

John Dixson scoops Igor Guerus' front kick and turns it into a tree top. Dixson moves to mount and Guerus starts to give his back as Dixson starts throwing punches. Ref steps in real quick before Guerus gets hurt.

1 0
Jack

We Didn’t Come as the Fire?

1 0
jimlapbap

After decades of working, paying bills, and waiting for retirement... why does the world decide to go to war now? #Retirement #RetiredLife #WarNews #darkhumor

0 0
Captain Thai Sparrow

Berdyansk Under Attack by Ukrainian Drones For daily global news videos, please visit Ranked.News/videos

0 0
Ranked News

⁉️💭 Élection-parents, c'est offert par Beneylu ? Retrouvez toutes les informations sur Élection-parents sur notre site : election-parents.fr #voteélectronique

0 0
Beneylu School

#MondayMotivation ~ "No one can make you feel inferior without your consent." - Eleanor Roosevelt #YOLOHW #believeinyourself #Mondaymood

0 0
yolohewe

Once numbering over 100K, the most regal #bird 👑🐦 in #Tanzania #Congo #SouthAfrica and #Namibia hangs on for survival against Big #PalmOil 🌴 Big #Tobacco 🚬 and #Hydroelectric dams 🚜 Help them survive! #BoycottPalmOil #Boycott4Wildlife @palmoildetect.bsky.social wp.me/pcFhgU-b7K

6 4
Palm Oil Detectives | #Boycottpalmoil #Boycott4Wildlife

Stop chasing vanity metrics! It's time to focus on what actually moves your business forward in 2026. #VanityMetrics #SocialMedia #Growth

3 0
Social Media WOW!

Day 3 Mutt Strut for @thetrevorproject.bsky.social 🐾🐶

0 0
Kim Fleck

CUTE CAT VIDEOS — OR CAT-ASTROPHE WAITING TO HAPPEN? “Doc” is back, with an important message for everyone worried about the risks of unregulated AI (artificial intelligence) in the years ahead. He calls it “Artificial UN-intelligence.” What do YOU call it? #AI #parody #BackToTheFuture

1 0
Whims of Resistance

Paddy Power’s World Cup ad is a cheeky "England-vs-America" football culture showdown, hilarious and spot-on! 🏴󠁧󠁢󠁥󠁮󠁧󠁿⚽️🇺🇸 #WorldCup #FIFAWorldCup

1 1
Matthieu Lamoureux

Özgür Özel: Salı günü geniş katılımlı bir grup toplantısı yapacağız 🔸️Salı günü çok geniş katılımlı bir grup toplantısı yapacağız 🔸️Butlancılara akıl verenler hukuku sonuna kadar zorluyor. 🔸️Butlancılar kendilerini OHAL zamanı Cumhurbaşkanı gibi görüyorlar..

6 0
Birlik Net

🚨🇮🇷 A new missile-armed fast attack boat, the "27 Rajab," has been unveiled by Iran's IRGC in Tehran's Revolution Square.

0 0
ownfeed

Must watch Credit to Mr. Bond aka safe_word_tango explains why the US wants to flood our Canadian dairy market to crush our market so they can take over and make #Canada further dependent on them. NOPE!! We will not allow this! #ElbowsUp #BuyCanadian

101 57
Cheryl in Nova Scotia 🇨🇦🍁🍁

Beige computers, glossy office ads, golden ties, and the remains of an ironic business rebrand. Shader Development Studio takes us inside the making of Shader.se, a scroll-driven 3D experience shaped by corporate satire, 80s business tech & seamless scene transitions: tympanus.net/codrops/2026...

21 1
codrops

She wanted to be a painter. Today, she designs immersive digital worlds. In today's spotlight, Sofia Papadopoulou shares her journey from canvas to code, along with insights and selected works. Read it here: tympanus.net/codrops/2026...

2 0
codrops

Real Housewives star Jen Shah details her time in prison with Ghislaine Maxwell: "When the victims would be on TV and talking, Ghislaine showed just complete disregard for them. And this is when they are pouring their hearts out in front of Congress and for the files to be released.”

1,070 333
Rachel Bitecofer

Here's how we can play 4 films on only 3 screens. #seattle #ballard #movietheater #movies #majesticbaytheatres

1 0
Majestic Bay Theatres

The Bank for International Settlements sounding the alarm on big tech private credit deals. Big tech finding loopholes in order to not fully disclosure financial information to the public. @empiremustfall.bsky.social

4 1
⚡️It’s Got Electrolytes⚡️

Tropes 🔪Insta-Love 🩸Second Chance Romance 🔪Touch Her And Die 🩸Why Choose FFM 🔪Friends to Lovers 🩸Who Hurt You 🔪Found Family Book recommendations | found family trope | dark romantic suspense | dark romance | romantic suspense | romance books | spicy romance books | dark romance novel |

0 0
lclaraauthor

Trump is so obsessed with himself that he’s blind to the needs of the American people. Whether it’s the Trump-Kennedy Center, the Trump passport, or the Trump $250 bill, stop the nonsense.

16 3
Juliana Stratton

Hard days indeed 😂

0 0
Dave

Your feet are younger than your head (by fractions of a second) ⏱️ Vlatko Vedral explains how gravity slows time, ever so slightly, closer to Earth’s centre. With today’s atomic clocks, even a few centimetres in height reveals the effect. 🧪 Watch the full talk: youtube.com/watch?v=TKBqNHEHgj0

4 1
Royal Institution

This really made my day I can’t lie. www.instagram.com/reel/DZETU1d...

1 0
Memo

Ottawa's QB Room 👀👀 Jake Maier and Bryson Barnes were putting on a show in preseason Week 2.

0 0
Canadian Football League

[abt name in FallGuys] 🦋🐕: on the PC it would give you a random name. I think I was something like 'TightSwan' and then a bunch of numbers 💬: TightSwan will be missed 🦋🐕: He served his purpose well. I'm no longer a TightSwan, I'm now a 'Loosey-Goosey' #FeileaVision

8 1
Féileacán Cú Out Of Context

Ich kann auf dem weg in die arbeit frühstücken🤯

0 0
mueslicup

If AI trains on AI, progress slows and quality can drop. #ai #data #internet

0 0
Stephen Blum

💔 During a recent Russian aerial assault on Kyiv, a terrified fawn was spotted seeking refuge under a car.

108 26
UNITED24 Media

Nagasaki Airport, Japan #Japan #Nippon

0 0
Japan CamBot

Q: Trump says he doesn't care about the midterms. Do you think he's focused enough on domestic policy? MIKE JOHNSON: What he said was taken out of context and it's so unfair. This president spends more time on domestic issues in one day than Biden did in four. That's an objective fact.

704 119
Aaron Rupar

#60MinutesUSA #ScottPelley Thank you for speaking up! She is destroying 60 Minutes. The nation will remember.

0 0
Dépaysement