🧠 Rethink routine lab values! 💡Find out how Calculated Globulins can help reveal previously undiagnosed #PIDs — live on IPOPI’s upcoming Hard Talks webinar on 28 October! 👇👇👇 to register

📢 The IPOPI 2024 Annual Review Report is now live! Explore the key moments, global events, and new initiatives that helped IPOPI grow stronger in supporting people with primary immunodeficiencies worldwide. 👉 Read the full review here: ipopi.org/2024-annual-... #IPOPI #AnnualReview

A well deserved honour for @ipopi.bsky.social Medical Advisory Committee's Vice Chairman Prof Martin van Hagen in recognition of his contributions to the field of clinical immunology & decades of dedication to our #PID patients community. Bravo Martin! More info: tinyurl.com/jwtdnv4f

Day 2 at the @EAPSCongress features a 👍 session on "Challenges in managing #immunodeficiencies" with talks on managing #PID #IEI in the ER by Dr Pere Soler-Palacin; Dr Fabien Touzot on diagnostic challenges of ALPIDs & on genetic susceptibility to infections by Dr Colobran Oriol

It was great to join my colleague Dr Jacques Rivière at the EAPS Congress in Lisbon during a session on patient engagement in scientific research to talk about @ipopi.bsky.social extensive experience on this topic, highlighting challenges & opportunities! #ESID #ERNRITA

🎉 IPOPI President @martinepergent.bsky.social took part in the Opening Ceremony of the @lasidofficial.bsky.social Meeting, marking the official start of this inspiring congress. A wonderful moment of collaboration and shared purpose between patient leaders and medical experts!

Such a well deserved recognition! Congratulations Martin!!

📸 Day 1 at the Latin American PID Patients Meeting was full of energy and meaningful exchanges! A great start full of knowledge, collaboration, and ideas to drive progress for people living with PIDs in Latin America! 💙 Made possible with the support of: CSL & Grifols #IPOPI #PID #LASID2025

💙 Day 2 of the Latin American PID Patients Meeting brought us closer together – patients, doctors, partners and advocates united in strengthening PID care and awareness. Thanks to CSL and Grifols for the support. #IPOPI #PID #LASID2025 #BuenosAires #PrimaryImmunodeficiency #PIDAdvocacy

🎥 What makes the Latin American PID Patients Meeting so special? Let’s hear it from the people who joined us on the last edition – participants and advocates who are shaping the future of PID care in the region. 💙 👉 This year we meet again in Buenos Aires! #IPOPI #PID #LASID2025 #BuenosAires

Just returned from an inspiring meeting in Cairo! Grateful for the thoughtful contributions of Dr. @NesrinEradwan, Dr. Sohilla Lofty, Prof. Aisha El-Marsafy, Dr. Nermine Gamal & all + 🙏 to our NMO rep Ms. Shaimaa El Araby. Thank you all for your insights & to #Grifols for the support!

A big step forward in strengthening patient advocacy in Eastern Europe! Proud to see such a dedicated group of united patient leaders and doctors. The power of the #PID community in action!! Grateful to @martinepergent @LeireSolis @OtiliaStanga @Miriam_A_F who made it happen!

🌍 Dr Nizar MAHLAOUI, Chair of the IPOPI Medical Advisory Panel, took part in the 5th European Symposium on Transition. The symposium gathered experts and stakeholders to exchange knowledge and best practices on how to ensure a smooth transition of care for young patients into adulthood.

Thanks @casanova_lab for sharing. A great article by van der burg et al 👉 #ataxiatelangiectasia can be a secondary finding in TREC-based NBS-SCID but raises an ethical dilemma worth further exploring! #newbornscreening @Screen4Rare #IPIC2025 @ipopi_info

🌐 We’re live! The new GATA2 website has launched! We’re thrilled to announce the official release of the new GATA2 website, a dedicated online hub for anyone affected by, working with, or researching GATA2 Deficiency. 🔗 Visit us now: gata2project.eu #GATA2Deficiency #RareDisease #PatientAdvocacy

Have you checked out the Proceedings from IPOPI’s 2024 Global Stakeholders Summit? Don’t miss out on this must-read! Our summer newsletter is packed with the season’s most impactful insights 🌍💡 👉 e-news.ipopi.org #IPOPI #SummerNewsletter #PrimaryImmunodeficiency

📣 SAVE THE DATE! #IPOPI is organising an important Roundtable focused on the intersection of viral threats, immune challenges, and respiratory care — from the perspective of patients with primary immunodeficiencies (PIDs). More updates soon! #PublicHealth #RareDiseases #PID

🆕 IPOPI is pleased to announce the renewal of its mandate as a member of the Patients’ and Consumers’ Working Party (PCWP) at the @ema.europa.eu. ▶️ Know more here: ipopi.org/ipopi-renews...

IPOPI is proud to share the results of our global survey on the long-term effects of COVID-19 in people living with primary immunodeficiencies (PIDs)! 📖 Discover the full publication 👉 lnkd.in/d6yx2uvA #IPOPI #PrimaryImmunodeficiency #LongCovid

📣 Early Bird Deadline Extended! You now have until July 31 to register for IPIC2025 at the special early bird rate. Take this extra time to secure your spot and get ready for an inspiring programme led by top experts in the field. 🔗 ipic2025.com/register-now/ #IPIC2025 #PrimaryImmunodeficiency

🌍 Great start to the Global Stakeholders Summit! Experts & advocates shared insights on the evolving field of #PIDs and associated conditions. More dialogue & ideas tomorrow! 💬 #GlobalStakeholdersSummit #PIDs

🌍 INSD Celebrations at CHU Liège – 26 June 2025 🎉 IPOPI’s Executive Director, @johanprevot.bsky.social, visited CHU Liège ahead of INSD, congratulating the team for their dedication to newborn screening awareness and for the warm welcome. #INSD2025 #NewbornScreening #EarlyDiagnosis #Neonatology

📢 IPOPI's latest Hard Talks episode is now live on YouTube! 👉 Watch now: youtu.be/KTi1BXGerZ8 #IPOPI #HardTalks #ADASCID

📅 IPOPI will be attending the 5th European Congress on Pediatric/Adult Transition in Chronic & Rare Diseases! The congress will explore current challenges in transition care for young people living with chronic and rare conditions. Info: transition-symposium2025.inviteo.fr/en/home/14

🌍 We’re looking forward to welcoming invited participants to our IPOPI Regional African PID Patients Meeting in Kenya! Stay tuned for updates from the event! Visit to know more: ipopi.org/africa2025/ #IPOPIAfrica2025 #IPOPI #ASID

🌞 Summer’s hottest read: the IPOPI Newsletter! Explore the latest on IPIC2025, the Jose Drabwell Research Grant, the inspiring WPIW call to action, and more. 📬 Don’t miss out: e-news.ipopi.org #IPOPI #SummerNewsletter

✨ Are you driven to advance research in immunodeficiencies? 💡 Scope: Projects should be patient-centred and knowledge-generating. 🌍 Who can apply: Researchers, clinicians, nurses, HCPs, and patient organisations worldwide. 📝 How to Apply: ipopi.org ⏱️ Deadline: August 31 Apply now! 💪

🌍 A big thank you to all the NMO delegates who participated in IPOPI's third NMO Webchat of the year! We were honored to hear from our guest, Dr Mihaela Bătăneanty, from Romania, who provided valuable insights into "Key Aspects of Daily Disease Management Across Age Groups". 🩺 #IPOPI #NMO #PID

Have you registered yet for #IPIC2025? 🏃‍♂️ If not, now is the time to act fast! Secure your spot and take advantage of Early Bird rates before they end on June 30. Don’t miss out! 🔗 Register here: lnkd.in/d6nw5KYH #IPIC2025 #PrimaryImmunodeficiencies

⏳️Extended deadline, same opportunity to showcase your work and latest findings 🧬 on primary immunodeficiencies & related conditions (including secondary immunodeficiencies) at #IPIC2025!

📢 Attention researchers & healthcare professionals. Great #IPIC2025 news for you ! 🗓️ The deadlines for abstract submissions and travel grant applications have been EXTENDED until June 30! 🔗 For more info check www.ipic2025.com #PrimaryImmunodeficiencies #IPIC2025 #CallForAbstracts #TravelGrant

🩺 IPOPI Hard Talks: ADA-SCID Management – from Diagnosis to Treatment 📅 June 6 | 15:00 CET Join us for an insightful webinar focused on ADA-SCID management, featuring expert perspectives from Prof Fabio Candotti and Dr Reem Elfeky. 🔗 Register now: ipopi.org/hard-talks-a... #IPOPIHardTalks #IPOPI

👏 On May 10 in Lithuania, a memorable Family Day brought together 40 patients, parents, and healthcare professionals. Miriam Ferreira, IPOPI NMO Programmes Manager, highlighted the vital role of collaboration and the power of patient advocates in improving care for PID patients. #IPOPI #PatientCare

Excellent update on IEI in Asia-Pacific by APSID: Healthcare resources for inborn errors of immunity in the Asia-Pacific region url:https://rupress.org/jhi/article/1/2/e20250023/277927/Healthcare-resources-for-inborn-errors-of-immunity

IPOPI Research Grant Programme! 💡 Scope: Projects should be patient-centred and knowledge-generating. 🌍 Who can apply: Researchers, clinicians, nurses, HCPs, and patient organizations worldwide. ⏱️ Deadline: August 31 🚨 Read application guidelines before applying: ipopi.org/ipopi-resear...

IPOPI's was at the high-level meeting “Building a Research and Innovation Ecosystem for Rare Diseases”. We highlighted why patients with rare diseases like PIDs must be involved throughout the entire healthcare ecosystem — from research and diagnosis to access and innovation. #EU #IPOPI #Advocacy

💙 Thank You for an Incredible World PI Week 2025! 💚 To all our NMOs, partners, and community members around the world — thank you for making this year’s World PI Week truly special! Let’s keep the momentum going — awareness is a year-round mission! 📢

📢 Co-hosted by MEPs Romana Jerković (S&D, Croatia) and Nicolás González Casares (S&D, Spain), this PID forum will spotlight the critical role of patient-centred research and the active involvement of patient organisations in EU-funded programmes. Register here: lnkd.in/dWh7jxyF #IPOPI #Patients

🏨 Plan Your Stay for IPIC2025! Special rates are available for a variety of rooms in Prague. Choose the accommodation that fits your needs and reserve your room today! Book your stay here: ipic2025.com/hotels/ #IPIC2025 #CongressAccommodation #SpecialRates

IPOPI is proud to take part in the high-level meeting on “Building a Research and Innovation Ecosystem for Rare Diseases”, hosted at the @europarl.europa.eu. 💡 It’s time for patients to be central actors in shaping a healthcare ecosystem that works for all. #IPOPI #RareDiseases #EUHealthPolicy

As we observe World PI Week 2025, we are pleased to see IPOPI's Executive Director, @johanprevot.bsky.social, featured in an article by rare disease advocate Tom Larmondra. 📖 Read the full article: linkedin.com/posts/tomlar... #WorldPIWeek #NewbornScreening #SCID #IPOPI #Screen4Rare

🌍 DAY 1 – IPOPI PID Advocacy & Awareness Workshop 🇨🇳 Together with PID Care China, we held the 1st national PID patients’ meeting! 🎉 37 participants from 10+ provinces joined to advance #PID care. This meeting was made possible thanks to: CSL, Takeda and Chiesi. 🙌 #PrimaryImmunodeficiency #IPOPI

🌟 DAY 2 - IPOPI PID Advocacy Workshop | China We addressed gaps in adult PID care and co-developed a bold 2025–26 plan for awareness and advocacy. Thanks to all participants! Grateful for the support: CSL, Takeda and Chiesi #PID #IPOPI #China #Advocacy #RareDiseases #PrimaryImmunodeficiency

Big news this spring: Portugal has taken a significant step forward in rare disease care with the launch of nationwide SCID newborn screening. A true milestone—don’t miss the full story. 📖 Read more at rb.gy/3njcdq #IPOPI #SCIDNewbornScreening #RareDiseaseCare

🎉Exciting Opportunity for Junior Doctors! IPOPI has made 20 travel grants available to support junior doctors attending IPIC2025 in Prague! ✈️ If you are interested in the primary immunodeficiency clinical landscape, this is an event you can’t afford to miss. 🔗 Apply at ipic2025.com

IPOPI participated in a symposium in Novi Sad, focusing on the importance of interdisciplinary approaches to PID diagnosis and treatment - ”Decoding Inborn Errors of Immunity: From Molecular Roots to Therapeutic Frontiers” #PID #IPOPI #Awareness #Immunity #Serbia

The 10th #SEAPID anniversary meeting took place in Bangkok! Co-hosted by IPOPI, Erasmus MC, Chulalongkorn Hospital & THCI, it focused on #CARTcells + their impact on #PID/#IEI. Johan Prévot reflected on 10 years of collaboration w/ SEAPID — looking back + looking forward! #GlobalHealth #IPOPI

Under 35 years old and working in the #PID #IEI field? Increase your chances to get a travel grant by submitting an abstract ! See you in Prague 💪💪

Our latest leaflet on Managing Congenital Athymia is out now! If you haven’t explored IPOPI’s newest resources yet, now’s the time. 📖 Stay informed and discover them here: 🔗 ipopi.org/publications...

Thank you, ISNS, for inviting IPOPI to speak about #Screen4Rare and share the patient perspective on the future of newborn screening at the 13th ISNS European Regional Meeting Always great to meet with friends like Peter Schielen and discuss how we can advance #NBS together. #NewbornScreening