🌎 On #UHCDay, IPOPI stands with the global call for health for all. The rarity of a condition should never determine someone’s access to the care they need. Everyone deserves quality, affordable healthcare, regardless of where they live or the condition they have. 👉 Check out more: bit.ly/4q3fwul

✨IPOPI proudly signed the EU Declaration on Rare Diseases, joining partners and policymakers in a united call to improve the lives of millions of people living with rare conditions. This is a decisive step towards a stronger, coordinated European approach.

Johan Prevot, IPOPI's Executive Director, joined the HLM during the Policy Discussion session where was discussed one of the most urgent topics about rare disease care: How can Europe build early access models that ensure equitable access to innovative orphan therapies and diagnostics? #HLMRARE2025

🌟 IPOPI participated in the third panel of the High-Level Meeting, focusing on: Accelerating Equitable Access to Diagnostics and Enabling Early Treatment Onset with Innovative Orphan Drugs and Digital Innovation.

✨ We have wrapped up an insightful and engaging PID Forum on “When Rare Meets the Not-So-Rare: the Case of PIDs & SIDs.” 💡It was an enlightening PID Forum on how expertise built around PIDs can help improve the understanding, diagnosis and management of SIDs. #PIDForum #EuropeanParliament

🎙️ New Immunity Pulse! Childhood cancer survivor Frea Van Haperen shares how years of recurrent infections were not just side effects. With Prof. Isabelle Meyts and Martine Pergent, we explore why early referral to immunology matters. 🎧 Listen now on Spotify: open.spotify.com/episode/0hPV...

💡Discover how the Primary Immunodeficiency Network of South Africa (PiNSA) brought patients, carers, and clinicians together at its inaugural PID gathering — sparking discussion, solutions, and real action. 👉 Read more: www.e-news.ipopi.org/ #IPOPI #SeasonalNewsletter

✨ Get a glimpse of the highlights from the 9th African PID Patients Meeting. We had the pleasure of welcoming 30 participants from 10 African countries: Algeria, Egypt, Ghana, Kenya, Morocco, Senegal, South Africa, Sudan, Tunisia, and Uganda. 👉 Check it out here: lnkd.in/dRiWWsQW #IPOPI

📖 What’s new in our autumn newsletter? The 2024 PIDetect Programme is empowering healthcare professionals across Mali and improving PID diagnosis nationwide. Find out how these efforts are creating real impact and what’s next! ✨ Read more: e-news.ipopi.org #PIDetect #PIDs #Mali

IPOPI invites you to the upcoming PID Forum at the European Parliament! PID Forum: When Rare Meets the Not-So-Rare – The Case of PIDs & SIDs. Register here: forms.gle/eHJsMh7aoD1V... We look forward to welcoming you!

🧬 Join @martinepergent.bsky.social in a heartfelt conversation with Joshua Williams about his long and challenging journey with secondary immunodeficiencies (SIDs). Dr. Stephen Jolles brings the medical perspective! 🎧 Listen now: open.spotify.com/episode/2IGi... #PIDAwareness #IPOPI

We’re happy to share this snapshot from the closing session of the Scientific Day on #Immunology and #AMR. 👏🏻 IPOPI was represented by Leire Solis, our Health Policy & Advocacy Director. 💙 🚀 We continue paving a promising path to protect people living with PIDs. 💪🏻

🎥 Discover Pulmonary Alveolar Proteinosis, a rare but serious complication affecting patients with PIDs. Our upcoming Mini-Doc sheds light on this hidden challenge, with expert insights, clear explanations, and the importance of early diagnosis. 🔔 Check it here: youtu.be/VogGge5OtIk

🥇 Dr Inês Serra was the winner of the Abstract Award at #IPIC2025 for her research: "Analysis of Genetic Overlap Between Inborn Errors of Immunity and Neurodevelopmental Disorders" 📺 Watch the full interview: youtu.be/DK1ZLCh_1AI

Have you read our Autumn Newsletter? 🍂📰 We shared an important milestone in neonatal screening — a major step forward for early diagnosis and improved patient care. 🔗 Missed it? Catch up on the full newsletter here: e-news.ipopi.org #IPOPI #SeasonalNewsletter

AMR is a growing threat — and especially serious for people with PIDs, who depend on effective antibiotics. As ENIPAR members, we call for stronger national action, better training and fair access to diagnostics. 📄 Call to Action: ehma.org/app/uploads/... #AMR #PID #WAW

🌍 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! ✨

💙 We are thrilled to share the exciting news of welcoming two fantastic additions to the #IPOPI family: GhanaPOPI and ASOGEIDI [Guatemala]! We are eager to collaborate with you to enhance diagnosis and care for patients with primary immunodeficiencies. #IPOPI #Immunodeficiency

🌍 On 18-19 November 2025, the European Medicines Agency held a meeting with patient, consumer and healthcare professional organisations. The meeting was to discuss different projects to optimise clinical trials, availability and supply of medicines or the international activities the EMA develops.

💬 "Patients must not be sidelined – their perspectives and experiences are vital in creating better treatments and improving lives." Read the full article and join the conversation🔗 www.theparliamentmagazine.eu/news/article...

This #AMRWeek, IPOPI highlights the urgent need for collaboration across healthcare providers, researchers, and policymakers to ensure that people with PIDs are not left behind in the global fight against antimicrobial resistance.

IPOPI welcomes the positive CHMP opinion recommending EU marketing authorisation for Waskyra™, a groundbreaking ex vivo gene therapy for Wiskott-Aldrich Syndrome. For more information: ipopi.org/ema-waskyra-...

💙 The #IPIC2025 Congress Dinner brought together our global PID community for an evening filled with laughter, friendship, and celebration. Thank you to everyone who joined us — your energy and smiles made this night truly special! 🌍 Find all the pictures here: web.facebook.com/media/set/?v...

Can the new Critical Medicines Act (CMA) truly make a difference for patients? At IPOPI, we believe the CMA’s success must be measured by one simple criterion: 👉 the real, positive impact it delivers for patients who rely on critical medicines every day. www.euractiv.com/opinion/the-...

🧬 Join @martinepergent.bsky.social in a heartfelt conversation with Joshua Williams about his long and challenging journey with secondary immunodeficiencies (SIDs). Dr. Stephen Jolles brings the medical perspective! 🎧 Listen now: open.spotify.com/episode/2IGi... #PIDAwareness #IPOPI

👋 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

🌟 Final day at #IPIC2025! What an inspiring wrap-up to three days of science, collaboration, and innovation! From gene therapy and genomics to liver health and young investigator achievements — today had it all A huge thank you to everyone who joined us and made this congress so special!

✨ Another fantastic day at #IPIC2025! From complex infections to cutting-edge global updates, today’s sessions brought powerful insights, inspiring discussions, and incredible learning moments from experts around the world 🌍 The spirit of collaboration and innovation was truly on display!

🎓 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

🌞 Good morning from #IPIC2025! Day 2 kicks off with AI-powered poster walks, and inspiring talks on targeted therapies and secondary immunodeficiencies 💡 Coffee’s ready ☕, minds are sharp 🧠 — let’s dive into another day of science, collaboration, and patient-centered innovation! 💙

#IPIC2025 kicked off with great energy! 🙌 From check-in to the first sessions, the enthusiasm was contagious. Here are some of our favourite shots from Day 1 📸

🚀 Only 1 day left! What are you looking forward to the most at #IPIC2025? #IPIC2025 #1DayToGo #CountdownToIPIC

At IPIC2025, we are honoured to have Dr Martin Zach as our opening session keynote speaker. Join us as he delves into "Boundaries of immunity and where to find them". Mark your calendar for this enlightening start to the congress! 📅 🔗 www.ipic2025.com #IPIC2025 #ScientificProgramme #KeynoteSpeaker

🚀 Get ready for IPIC2025! Download the congress app for easy access to the scientific programme, speaker info, floor plans, and more. Search for IPIC2025 on the App Store and Google Play! 📲

🎧 Have you listened yet? If you missed it when it first came out, now’s the perfect time to catch up! 🎙️ Listen and follow our podcast: open.spotify.com/episode/2Mxk...

🎥 You can now watch the full recording of our latest IPOPI Hard Talks on Clinical Application of Calculated Globulin Screening — featuring insights from Prof. Stephen Jolles and Dr. Cecilia Poli. ▶️ Watch now on YouTube: youtu.be/t43ldp0LsTU Webinar supported by CSL.

🎉 IPOPI is thrilled to announce that the IPIC2025 Scientific Committee has approved a record-breaking 258 abstracts, showcasing cutting-edge research in the field of PIDs. 🏅 Three winners have been selected—curious who they are? 🔗 Visit our website ipic2025.com #IPIC2025 #AbstractWinners

✨ Free Public Transport in Prague! IPIC2025 delegates get a complimentary pass for unlimited metro, tram & bus rides from Nov 5 to Nov 7. Available only for delegates registered by 30 October. ➡️ Read More: lnkd.in/dBFM9gr4 #IPIC2025

The IPOPI Jose Drabwell Research Grant Programme is supporting 4 innovative projects with 2 years of funding to advance scientific and clinical research in Primary Immunodeficiencies (PID). 🧬 👏 We celebrate these brilliant minds driving hope and progress in the PID community!

🚀 The final countdown begins! ⏳ Just 1 week until IPIC2025 Congress! Are you ready for a week filled with innovation, insights, and inspiration? 👉 ipic2025.com #IPOPI #IPIC2025

🫱🏻‍🫲🏿 Martine Pergent, IPOPI President, participated in the TRANSFORM Alliance meeting, addressing access to Advanced Therapy Medicinal Products (ATMPs) for rare disease patients. Martine’s intervention was a strong call for equitable and timely access to transformative therapies.

📢 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

🧬 IPOPI Hard Talks is next week! Register here: app.livestorm.co/ipopi/ipopi-... Join us for an insightful session on the Clinical Application of Calculated Globulin Screening, featuring Prof Stephen Jolles and Dr Cecilia Poli, both experts in primary and secondary immunodeficiency management.

🌍 IPIC2025 is almost here! Join healthcare professionals, researchers, and patient advocates in Prague for the leading international congress on Primary Immunodeficiencies. 👉 Register now: ipic2025.com #IPIC2025 #Prague2025

🌍 IPOPI visited the Vall d'Hebron Maternity and Children Hospital in Barcelona. It was a great opportunity to learn more about their work in PIDs and explore ways to continue strengthening collaboration in the field. We thank Dr. Soler-Palacín and the Vall d’Hebron team for their warm welcome! 💙

🍂 Your autumn update is here: the IPOPI Newsletter! Stay informed this season: IPIC2025 is approaching, celebrate the Jose Drabwell Research Grant winners, hear WPIW’s global initiatives, tune into our new podcast and more. 📬 Don’t miss out: e-news.ipopi.org #IPOPI #AutumnNewsletter

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

💙 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

📸 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

👏 We are proud to celebrate and announce that Professor Martin van Hagen, Vice-Chairman of IPOPI’s Medical Advisory Panel (MAP), has been appointed as Officer of the Order of Orange-Nassau by His Majesty the King of the Netherlands. #IPOPI #RoyalHonor #ClinicalImmunology #HealthcarePioneer