IPOPI
@ipopi
📄 IPOPI’s leaflets support patients, families, and healthcare professionals with easy-to-understand, patient-focused information — from diagnosis to treatment and daily life. 🎥 Explore our resources, available at: ipopi.org/publications... Together, we empower the PID community through knowledge.
0
Likes
1
Reposts
0
Replies
More from IPOPI
-
Today, on World Rare Disease Day, we stand with the millions of people worldwide living with a rare disease. At IPOPI, we advocate for early and accurate diagnosis, equitable acce...
5 -
🌍 World Children’s Day Today we celebrate the voices, rights, and dreams of children everywhere. A reminder that children are our future — and they deserve safety, health, educa...
2 -
One week to go! From April 22–29, we come together for World PI Week. Because access to full care — from early diagnosis to timely treatment and support — cannot wait. Join us!...
2 -
At IPOPI’s PID Forum in the European Parliament, MEP Tomislav Sokol highlighted the importance of adapting European health and social systems to support people living with Primary...
1 01:19 -
🎓 Don’t let your CME credits play hide and seek! Scan your badge at the auditorium entrance 👀 and head to the registration area to claim them. #IPIC2025 #Prague #cmecredits
0
🎓 Don’t let your CME credits play hide and seek! Scan your badge at the auditorium entrance 👀 and head to the registration area to claim them. #IPIC2025 #Prague #cmecredits
One week to go! From April 22–29, we come together for World PI Week. Because access to full care — from early diagnosis to timely treatment and support — cannot wait. Join us! Together, we will make this happen. #WorldPIWeek #AccessToCare #WorldPIWeek2026 #PatientAdvocacy #WeCantWait
Today, on World Rare Disease Day, we stand with the millions of people worldwide living with a rare disease. At IPOPI, we advocate for early and accurate diagnosis, equitable access to treatment and care, and stronger recognition of primary immunodeficiencies. #WorldRareDiseaseDay #RareDiseaseDay
👋 That’s a wrap on #IPIC2025! Patricia and the IPOPI team just wanted to say a big thank you and goodbye to everyone who joined us in Prague! 💙 See you next time! ✨ #IPIC2025 #Immunology #RareDiseases #PrimaryImmunodeficiencies #TeamIPOPI
🌍 The IPOPI 2026 Jose Drabwell Research Grant Programme is open for applications! Know more here: ipopi.org/ipopi-resear... #IPOPI #PrimaryImmunodeficiencies #PID #Immunodeficiency #ResearchGrant
IPOPI gathered policymakers, healthcare professionals, and patient advocates to discuss ageing with primary immunodeficiencies (PID). As life expectancy improves, the focus is clear: how can Europe adapt to support an ageing PID community? #PID #RareDiseases #EUHealth #IPOPI
Day 1 of World PI Week is here! From April 22–29, we’re coming together to raise awareness of primary immunodeficiencies — and to push for what matters most: access to full care. From early diagnosis to timely treatment and ongoing support — it cannot wait. Join us this week! #wpiw2026 #ipopi
On European Patients’ Rights Day, we stand up for: 🧡 Timely diagnosis 🧡 Equal access to treatment 🧡 Quality care for everyone living with a PID At IPOPI, we will keep working to make sure the voice of the PID community is heard and that no one is left behind. #EuropeanPatientsRightsDay #IPOPI
🌍 World Children’s Day Today we celebrate the voices, rights, and dreams of children everywhere. A reminder that children are our future — and they deserve safety, health, education, and the chance to thrive. 💛 Together, we can build a world where every child grows, learns, and shines: healthy! ✨
At IPOPI’s PID Forum in the European Parliament, MEP Tomislav Sokol highlighted the importance of adapting European health and social systems to support people living with Primary Immunodeficiencies as they grow older. #IPOPI #PID #EuropeanParliament #RareDiseases #HealthPolicy
Democrats are fighting back against gerrymandering after the Supreme Court's decision gutted the Voting Rights Act - they're looking to make big changes in 4 key states ahead of the 2028 election. Credit: @aaronparnas.bsky.social | Source #Gerrymandering #Redistricting #VotingRights #Democrats
What can an apex predator teach us about global biodiversity? In Central Asia, camera trap footage of leopards helps reveal the health of entire ecosystems and the biodiversity they sustain. Discover more this #BiodiversityDay: www.conservationxlabs.com/blog/what-an...
Happy birthday Robert Zemeckis, born May 14, 1951. Full Post www.facebook.com/photo/?fbid=... . #TodayInNerdHistory #May14 #robertzemeckis #backtothefuture #RomancingTheStone #WhoFramedRogerRabbit #DeathBecomesHer #ForrestGump #birthday #History #News #OTD #FYP #nerd .
Had a great conversation about the class-based origins of race in American with Andre The Beast Crayton... open.substack.com/pub/letsmake...
Comcast News-MSNOW was so obvious in their bull manure work, even other platforms were calling out the pro-Trumpism drumbeat. 'ScaredBro' Scarborough and his now 3rd wife 'Meek' Mika, were 'love-nesting homewreckers' at-the-time and being leveraged by Trump, as was Matt Lauer.
Good Morning! It's Wednesday 31 December 2025. Birthdays for veteran actor Anthony Hopkins (88), ex-Manchester United Manager Alex Ferguson (84), actor Ben Kingsley (82), TV presenter Lowri Turner (61) & ex-cricketer Matthew Hoggard (49). Andy Lloyd's Morning Show is live every weekday from 09:00.
Katya Adler and Nick Robinson discuss how incremental progress on UK-EU relations will only have a limited effect on the UK economy. Best for Britain’s report explains how EU Membership would bring the greatest growth to the UK economy, and is what British voters want.
LA farmer Kaden Cable castigates Trump for abandoning farmers: "Trump cut billions of dollars from federal programs that funded small farmers. We've just been left to the winds. Trump doesn't care about people like me or like you. He treats us like we're bugs on the sidewalk and laughs at us."
It's one thing to protest against the supposed 'threat of militarism' without connecting it to russia's aggression. It is another matter entirely to sabotage companies that help a sovereign European nation defend itself against russian terrorism - in the name of a terrorist regime allied to russia
I told myself that if my dog wasn't better by Monday that I'd take him to the vet On my way there now... poor buddy :/
Do you guys remember when these were the only crumbs we had of what #Lucanis sounded like? Now we’re out here telling @willynilly123.bsky.social to “sit down” and giving him heart palpitations. What a long way we’ve come. 🤣
It is now routine behavior for ICE and CBP to lie to lawyers about the whereabouts of their clients, which often leaves counsel confused and less effective. Sunny Naqvi Press Conference at Broadview 03/08/26 #robheld #broadview #ICEdetention #humanrights #DHSLies #chicagoiswatching #borderpatrol
#trump #McCarthy #bad #war #usa President Trump have you know sense of decency?
What people think aura farming is vs what real aura farming is... #milsim #combatmedic #indiegame
#OTD in 2013, Jupp Heynckes' Bayern achieved glory at Wembley by beating Jürgen Klopp's Borussia Dortmund 2-1 in the Champions League final. Mario Mandzukic opened the scoring for Bayern, before Arjen Robben won it in the 89th minute. 🇩🇪 Bayern 2-1 Dortmund 🇩🇪 #UCL #FCBBVB | May 25, 2013
🚨 URGENT: Every MP must see this before the vote on disability cuts 🚨 The govt’s changes still push hundreds of thousands into poverty & create a 2-tier system where support depends on when you applied. Tag your MP. Tell them to vote NO.
🚨🇦🇺Australia’s controversial National Mother’s Day Child Pickup Service has officially launched today.... 😏✌️☮️ #channelneinnewsaus #satire #mothersday #news #mums #dads
Food expert @profpaulbehrens.bsky.social of @ox.ac.uk with a vital message for MPs & the public. "If we don't lead this change on the front foot, we'll be forced into it anyway as food shocks intensify." Full talk: www.youtube.com/playlist?lis... #NationalEmergencyBriefing #NEB2025 #FoodShortages
🔊 Yanislava Karusheva wrapped up the 2nd EASD Early Career Academy Meeting in Düsseldorf 🇩🇪 that offered unique opportunities for young researchers to connect with possible mentors at the pinnacle of their careers. 📺 Watch & read here: easd-elearning.eu/news/468/EAS... #Diabetes #Research
#Maga #trump #trending #viral #fyp #congratulations #Liberals #democrats #conservatives #news #today
Since 2012, Palazzo della Carovana has hosted selected works from the Luigi Pecci Centre for Contemporary Art. Not decoration, but a dialogue between past and present. Discover it through guided tours. Free entry, online booking required: piazzadeicavalieri.sns.it
Iran's Islamic Revolutionary Guard Corps said it will retaliate against U.S. strikes of missile launchers in southern Iran after the U.S. sank two IRGC ships it said were attempting to lay mines in the strait. #Iran #Hormuz #USIran #MiddleEast #OilMarkets
Don’t just do the work…know where the work is taking you. 🧭 More: tiny.cc/st62101 What's 1 'small thing' you're doing today that leads to a 'big thing' later? ⚡️ Learn smarter. Finish faster and wiser!⚡️ #highperformancecoach #mindsetmatters #GotaPlan www.heroic.us/?fpr=BeaHeroNow
🚨🚨🚨🚨Epstein survivor Lisa Phillips reads horrific account of a young woman after giving birth from the Epstein files Trump Epstein reading room. WHAT DID GHISLAINE MAXWELL DO WITH THE BABY? “Close your eyes”
A huge thank you to Leah and Hannah from #indiechildrensauthornetwork for the lovely things they said about #CrooksanndNannies in their amazing podcast "We wrote a book, now what?" It's available on YouTube now! #kidsbooks #indiechildrensauthornetwork #podcast #slime amzn.eu/d/0hTHyflQ 💙📚 #booksky
Why Natarajasana Is Called the Pose of Enlightenment Natarajasana represents Shiva’s Tandava—the eternal cycle of destruction and creation. As the body bends and balances in impossible alignment, the ego begins to break. This intense heart-opening posture activates powerful energy flow, expands awar
We are excited to present multiple views and voices on polygamy as we prepare to study D&C 132 and Official Declaration 1 in the coming weeks. Full video coming Sunday November 9. youtube.com/@dialoguejou...
We’ve all experienced the headache of managing contracts and subscriptions: long procedures, unclear offers, expenses that keep piling up. 😖 That’s where Papernest swoops in to save the day and make it all simple, handling: - Moving: they take care of... (1/8)
Level design is going well, just chilling in the trees 😌🌲 #GodotEngine #GameDev #IndieDev
Our urgent treatment and walk-in centres treat adults and children with urgent but non life threatening illnesses or injuries 💙 They're here for you this #BankHoliday weekend and you can walk in without an appointment. ⚠ If unsure, use #NHS111 📱 @nhscandm.bsky.social
Where My Treasure Truly Lies” #EternalWealth #DivinePurpose #ChristianMotivation #TreasureInHeaven ✨
SpaceForest launched its sounding rocket from Poland via a mobile ‘launch pad’. www.esa.int/Enabling_Sup...
A Weird Glitch I Encountered In Ball x Pit! #highlights #gaming #autisticgamingplus
S3E12 is dropping on Thursday 12th March 2026 - Set your reminder. This one's coming soon. 🎙️ My guest is Ursula Brendling. Her story is going to give you goosebumps and maybe a nudge to finally take that first step you've been putting off. 👇 Drop a 🌊 in the comments if you're ready!
#OpenSourceOpenMind #TheCommune #7heCommun3Of0n3 🌹🌹 May 23 2026 🔔🔔🔔 29 May 26 Substack is Stacking Sign up or Not Who Cares? It's 0nly Temporary Anyway 😊
Breakthrough Cancer Treatments and Record Lows in Smoking Rates #health #wellness #medicine #healthnews #publichealth #healthcare
Happy Mother's Day to my mum Nellie Walsh from Gowna, County Cavan In Ireland. The Boys of Blue Hill Hornpipe. #Tinwhistle #Irishtraditionalmusic.. come z
Discover the magical world of alebrijes ✨ #alebrijes #CasaDeChiles #Mexico https://www.casadechiles.com/what-are-alebrijes/?utm_source=Bluesky&utm_medium=Bluesky&utm_campaign=Bluesky&utm_id=Bluesky&utm_term=Bluesky&utm_content=Bluesky
1970's 🇦🇺 Australia... the olive green & orange era... 😏✌️☮️ #sammythompson👊 #Australia #1970s
Seam rippers, & thread pullers, & chainsaws, oh my! It's darker in here than the last moment before dawn. You know what that means—your breakthrough is on the horizon. Don't spare the grisly details. Comment, share, & come back tomorrow for more #KidlitZombieWeek. #WriterSky #WritingCommunity
The Echeng Bridge (Goose-City Bridge) in Huizhou, China, does much more than streamline traffic; it is an award-winning piece of architectural art. Resembling two graceful swans meeting above the Dongjiang River