iiinova — where your digital self keeps evolving

IPOPI was pleased to join the K-POINT scientific forum in Rome on 29–30 September, bringing together international experts in immunology and hema-oncology to discuss some of the key challenges in PIDs and SIDs. #IPOPI #KPOINT #PID #SID #Immunology #PatientVoice

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IPOPI @ipopi.bsky.social · 01/10/2026

Primary and secondary immunodeficiencies may differ in origin, but their challenges can overlap. Our policy recommendations highlight five key areas for stronger EU action. 📄 Explore the full recommendations: bit.ly/4xgbJgq #Immunodeficiencies #RareDiseases #EUHealth #HealthPolicy

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IPOPI @ipopi.bsky.social · 28/09/2026

💛 From 5–9 October 2026, join IPOPI in marking International Plasma Awareness Week. We’ll share stories, facts and special content highlighting why plasma matters and how plasma donations help make life-saving treatments possible for people living with immunodeficiencies. #IPAW2026

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IPOPI @ipopi.bsky.social · 24/09/2026

📢 Newly published article, “Appraisal of primary immunodeficiencies in Latin America and the Caribbean using the IPOPI PID Life Index – where are we now?” 📖 Read the full article in Frontiers in Immunology: www.frontiersin.org/journals/imm... #IPOPI #PrimaryImmunodeficiencies

frontiersin.org

Frontiers | Appraisal of primary immunodeficiencies in Latin America and the Caribbean using the IPOPI PID Life Index – where are we now?

ObjectiveAnalyse the implementation of the 6 Principles of Care (PoC) for primary immunodeficiencies (PIDs) in Latin America and the Caribbean countries.Meth...

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IPOPI @ipopi.bsky.social · 24/09/2026

Plot twist: IPOPI is getting a glow-up! 💙🧡 A fresh new look is on its way — but the heart of who we are isn’t changing. Stay tuned. The new IPOPI is coming soon! #IPOPI #NewLook

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IPOPI @ipopi.bsky.social · 23/09/2026

💙 Behind every policy recommendation is a lived experience. 📘 When Rare Meets the Not-So-Rare turns these experiences into recommendations for more coordinated, accessible and patient-centred care across the EU. 🔗 Read the full document here: bit.ly/4xgbJgq

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IPOPI @ipopi.bsky.social · 21/09/2026

Welcome Singapore to the IPOPI community! 💙 Another country joins our growing global network, strengthening the voice of people living with primary immunodeficiencies and bringing our community even closer together. #IPOPI #PrimaryImmunodeficiencies #PID #Singapore #PatientCommunity #GlobalNetwork

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IPOPI @ipopi.bsky.social · 17/09/2026

Every patient deserves safe, high-quality care. On World Patient Safety Day, IPOPI joins the global call to make healthcare safer for everyone. 💙 Safe care. Every patient. Every time. #WorldPatientSafetyDay #PatientSafety #PatientsFirst #PrimaryImmunodeficiencies #PID #Healthcare #IPOPI

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IPOPI @ipopi.bsky.social · 16/09/2026

🌍 It was great to bring our National Member Organisations together for another IPOPI NMO Webchat — a space to connect, exchange experiences, share updates and strengthen collaboration across our global community. 💙🧡 #IPOPI #NMO

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IPOPI @ipopi.bsky.social · 15/09/2026

🧬 Living with GATA2 deficiency? Your experience matters. Your perspective can help contribute to a better understanding of GATA2 deficiency and support more personalised care. 📅 Survey closes: 31 October 2026 👉 Take the survey: www.surveymonkey.com/r/V7B9F83 🔗 Learn more: gata2project.eu

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IPOPI @ipopi.bsky.social · 14/09/2026

🧬 IPOPI Executive Director, Johan Prevot, attended the Genomics in Newborn Screening Workshop 2026 in Copenhagen, hosted by the Statens Serum Institut (SSI).

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IPOPI @ipopi.bsky.social · 09/09/2026

🌍 How can Europe better address the needs of people living with primary and secondary immunodeficiencies? 🔗 Read the full recommendations: bit.ly/4xgbJgq #IPOPI #Immunodeficiencies #PrimaryImmunodeficiencies #EUHealth #HealthPolicy #RareDiseases

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IPOPI @ipopi.bsky.social · 02/09/2026

📢 The IPIC2025 Congress Report is out now! Explore the key highlights and insights from the congress in Prague, which brought together the global PID community to discuss diagnosis and clinical care. 👉 Read the report: l1nq.com/t1fyacf #IPIC2025 #IPOPI #CongressReport See less

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IPOPI @ipopi.bsky.social · 01/09/2026

A big thank you to everyone who applied for the IPOPI José Drabwell Research Grant Programme 2026! 💙 Stay tuned for more updates! #IPOPI #JoseDrabwellResearchGrant #PrimaryImmunodeficiencies #PID #PIDResearch

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IPOPI @ipopi.bsky.social · 28/08/2026

During a recent trip to Brazil, Martine Pergent, President of IPOPI, had the opportunity to visit the brand-new CAR-T cell production unit at the Fernandes Figueira National Institute of Women’s, Children’s and Adolescents’ Health in Rio de Janeiro. #IPOPI #AdvancedTherapies #CARTCells #Innovation

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IPOPI @ipopi.bsky.social · 14/08/2026

Something is in motion. And this is just the beginning. Coming soon.... #ipopi #newchapter

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IPOPI @ipopi.bsky.social · 13/08/2026

We’re delighted to welcome Croatia and Panama to the IPOPI family! 🌍 Please join us in giving them a warm welcome! 💙🧡 #IPOPI #PrimaryImmunodeficiencies #PID #GlobalCommunity #Croatia #Panama

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IPOPI @ipopi.bsky.social · 11/08/2026

🌍 What did 2025 look like for IPOPI? Take a look back at the activities and achievements that shaped our year and the collective efforts that continue to drive our mission forward. 👉 Read the full report: lnkd.in/g3ZQd6y5 #IPOPI #PID #PrimaryImmunodeficiencies #PatientAdvocacy

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IPOPI @ipopi.bsky.social · 04/08/2026

📘 Discover the key insights from the IPOPI Latin American PID Patients' Meeting. 📖 Read the report here: lnkd.in/dRiWWsQW #IPOPI #PrimaryImmunodeficiencies #RareDiseases #PatientAdvocacy #LatinAmerica

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Reposted by IPOPI

IPOPI @ipopi.bsky.social · 07/07/2026

⏳ Time is passing by — don’t miss your chance to apply! IPOPI aims to fund 3 projects with grants of €10,000 each, supporting research that can help advance care, improve quality of life and drive innovation for people living with immunodeficiencies. Apply now: ipopi.org/ipopi-resear...

ipopi.org

IPOPI Jose Drabwell Research Grant Programme 2026 - IPOPI

Apply for the IPOPI Research Grant Programme to support patient-centred research in primary immunodeficiencies. Grants up to €30,000. Deadline: August 31.

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IPOPI @ipopi.bsky.social · 21/07/2026

📢 If you are an African healthcare professional involved in the diagnosis or care of people with IEI/PID in an African country: 📝 Take the survey here in English: www.surveymonkey.com/r/ASIDregist... 📝 Take the survey here in French: fr.surveymonkey.com/r/ASIDregist...

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IPOPI @ipopi.bsky.social · 20/07/2026

Ready for your next adventure? ✈️ Our PID Travel Checklist highlights a few simple steps to help you prepare before you travel. Save it for your next trip! 💙 #TravelWithPID #PrimaryImmunodeficiency

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IPOPI @ipopi.bsky.social · 07/07/2026

ipopi.org

IPOPI Jose Drabwell Research Grant Programme 2026 - IPOPI

Apply for the IPOPI Research Grant Programme to support patient-centred research in primary immunodeficiencies. Grants up to €30,000. Deadline: August 31.

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IPOPI @ipopi.bsky.social · 30/06/2026

That's a wrap! 👏 The second and final day of the Global Stakeholders' Summit 2026 focused on shaping the future of PID diagnosis and prognosis. Thank you to everyone who joined us over the past two days and contributed to these valuable discussions. #GlobalStakeholdersSummit #PIDs

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IPOPI @ipopi.bsky.social · 29/06/2026

✨ A great start to IPOPI's Global Stakeholders' Summit 2026! Today, experts from across the PID community and beyond gathered in Cascais, Portugal, to exchange ideas and explore what the future of primary immunodeficiencies and associated conditions may look like in 2036. More to come tomorrow! 🌍

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IPOPI @ipopi.bsky.social · 28/06/2026

🩵 Every year on 28 June, we celebrate International Neonatal Screening Day, raising awareness of the life-changing impact of newborn screening. 🌐 For more information visit: neonatalscreeningday.org

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IPOPI @ipopi.bsky.social · 27/06/2026

🌍 To mark International Neonatal Screening Day, IPOPI is pleased to launch its new leaflet, Global Access to SCID Newborn Screening: A PID Life Index Perspective. 📄 Read the leaflet: ipopi.org/wp-content/u... #InternationalNeonatalScreeningDay #INSD

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IPOPI @ipopi.bsky.social · 26/06/2026

IPOPI was pleased to attend the recent IDF Conference in San Antonio, Texas, which provided a valuable opportunity to connect with our friends at the Immune Deficiency Foundation and exchange with colleagues from across the primary immunodeficiency community. #IPOPI #PrimaryImmunodeficiencies

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IPOPI @ipopi.bsky.social · 24/06/2026

📅 On 23 June, the PID Forum, "Rare and Not-So-Rare: Shaping EU Policy for PIDs & SIDs", brought together policymakers, healthcare professionals and patient advocates at the European Parliament, hosted by MEP Romana Jerković (S&D, Croatia). #PIDForum

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IPOPI @ipopi.bsky.social · 22/06/2026

📬 Your quarterly IPOPI update has arrived! Discover inspiring stories, advocacy milestones, research breakthroughs, and global initiatives that are shaping a brighter future for people living with PIDs worldwide. 🌍💙 📖 Read the full newsletter: e-news.ipopi.org #IPOPI #QuarterlyNewsletter

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IPOPI @ipopi.bsky.social · 17/06/2026

How can EU policy better respond to the needs of people living with primary and secondary immunodeficiencies? Because rare does not mean invisible — and not-so-rare still deserves attention. #IPOPI #PIDForum #PIDs #SIDs #RareDiseases #EUHealthPolicy #HealthPolicy #PatientAdvocacy

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IPOPI @ipopi.bsky.social · 15/06/2026

The Nordic PID community came together with a clear goal: to regain momentum after the COVID years and rebuild a strong, connected Nordic collaboration. During the meeting, participants developed a 3-year plan focused on both mission and governance, with shared priorities for the years ahead.

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IPOPI @ipopi.bsky.social · 11/06/2026

Missed our IPOPI Hard Talks webinar on the diagnosis of autoimmune pulmonary alveolar proteinosis? Watch the session: youtu.be/keXol2bHCqE?... This webinar was supported by an educational grant from SAVARA. #IPOPI #PIDHardTalks #PulmonaryAlveolarProteinosis #AutoimmunePAP #ClinicalEducation

youtu.be

IPOPI Hard Talks: Diagnosis of Autoimmune Pulmonary Alveolar Proteinosis

YouTube video by IPOPI

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IPOPI @ipopi.bsky.social · 08/06/2026

🌍 IPOPI was pleased to participate in the 19th Moroccan IEI Congress & 10th Maghrebin IVIG Meeting in Casablanca, Morocco. #Morocco #Immunology #IVIG #GlobalHealth

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IPOPI @ipopi.bsky.social · 08/06/2026

Join us for the upcoming IPOPI Hard Talks session exploring the diagnosis of autoimmune pulmonary alveolar proteinosis. Register now: ipopi.org/hard-talks-a... Webinar supported by SAVARA.

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IPOPI @ipopi.bsky.social · 28/05/2026

🌍 The IPOPI 2026 Jose Drabwell Research Grant Programme is open for applications! Know more here: ipopi.org/ipopi-resear... #IPOPI #PrimaryImmunodeficiencies #PID #Immunodeficiency #ResearchGrant

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IPOPI @ipopi.bsky.social · 28/05/2026

🎥 In this IPOPI mini documentary, we take a closer look at the world of primary and secondary immunodeficiencies. A global conversation on diagnosis, lived experience and the need for greater awareness. Watch the mini documentary and learn more: www.youtube.com/watch?v=QSNI...

youtube.com

MINI DOC - «A closer look at Primary and Secondary Immunodeficiencies»

YouTube video by IPOPI

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IPOPI @ipopi.bsky.social · 26/05/2026

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

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IPOPI @ipopi.bsky.social · 25/05/2026

Join us for the upcoming IPOPI Hard Talks session exploring the diagnosis of autoimmune pulmonary alveolar proteinosis. Register now, invite your colleagues and networks, and be part of an important conversation on this challenging topic in PID care. ipopi.org/hard-talks-a...

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IPOPI @ipopi.bsky.social · 21/05/2026

IPOPI is deeply saddened to learn of the passing of Paweł Górniak, President of the Poland Association “Immunoprotect”. On behalf of IPOPI, we extend our heartfelt condolences to Paweł’s family, to Immunoprotect, and to the Polish PID community during this very difficult time.

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IPOPI @ipopi.bsky.social · 20/05/2026

🇧🇪 #IPOPI was present at the Pharmaceutical Law Forum, held in Brussels. For IPOPI, engaging in these conversations is essential to ensure that the voice and needs of people living with primary immunodeficiencies remain part of the broader European health policy dialogue. #PrimaryImmunodeficiencies

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IPOPI @ipopi.bsky.social · 20/05/2026

Join us for the upcoming IPOPI Hard Talks session on the diagnosis of autoimmune pulmonary alveolar proteinosis. Register now to attend and help us make this a great conversation on a challenging topic in PID care: ipopi.org/hard-talks-a... #AutoimmunePAP #PAP #PIDHardTalks #IPOPI

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IPOPI @ipopi.bsky.social · 12/05/2026

✨Our NMO Webchat community came together for an inspiring and forward-looking discussion on the future of World PI Week, with 25 participants from 23 countries joining the exchange. 🙏 Thank you to all NMOs who joined! #IPOPI #NMOWebchat #PIDAwareness #NMOs #StrongerTogether

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IPOPI @ipopi.bsky.social · 07/05/2026

IPOPI pays tribute to Professor Claude Griscelli, a pioneering figure in paediatric immunology and the PID/IEI community. We extend our sincere condolences to his family, colleagues, students and all those whose lives and work were touched by him. Read our tribute: ipopi.org/in-memoriam-...

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IPOPI @ipopi.bsky.social · 07/05/2026

📩 Have you checked out our latest newsletter yet? Get updates from our NMOs across Australia, Canada, Germany, France, and the USA. 👀Don’t miss out: e-news.ipopi.org #IPOPINewsletter #NMOUpdates

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IPOPI @ipopi.bsky.social · 29/04/2026

Your immune system is more than a defender; it is a superhero that knows how to balance protection and control. ⚖️ That balance is key to your health and well-being. Let’s raise awareness together!🌍📣 👉 Learn more: lnkd.in/d7NDnUPU #WorldImmunologyDay #IPOPI

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IPOPI @ipopi.bsky.social · 29/04/2026

🎤 At the International Plasma Protein Congress (#IPPC2026) in Milan, IPOPI is actively representing the voice of people living with primary immunodeficiencies and associated conditions in key policy discussions shaping the future of plasma-derived therapies. #IPOPI #IPPC2026 #EUHealth

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IPOPI @ipopi.bsky.social · 23/04/2026

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

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IPOPI @ipopi.bsky.social · 22/04/2026

On April 21st, IPOPI's PID Forum "Growing older with a PID - Challenges & opportunities in an ageing Europe". A big thank you to MEP Sokol, MEP Vigening, all speakers and participants for driving forward this important conversation. #PID #RareDiseases #EUHealth #AgeingPopulation #HealthcarePolicy

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