🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

💡 Did you know? Every newborn screening test tells a story of hope and progress. As #INSD nears on June 28, join us in celebrating the hidden figures who shaped PKU treatment. #INSD2025 #HiddenFigures

IPOPI joins European Patients' Forum EURORDIS-Rare Diseases Europe in urging EU leaders to protect patient voting rights in EMA committees. Patients must stay full & equal partners in shaping medicines.#KeepPatientsVoting Read why this matters: go.eurordis.org/nLKMeX

🔬 At this year’s EHA Congress, IPOPI’s President Martine Pergent took part in the 3D-GATA2 annual meeting, contributing to the review of Work Package 3 – focused on patients’ perspectives and quality of life in the 3D-GATA2 project. IPOPI is helping ensure that the voices of

📅 IPOPI will be attending the 5th European Congress on Pediatric/Adult Transition in Chronic & Rare Diseases! This congress will explore current challenges and key questions in transition care for young people living with chronic and rare conditions. 🔗 More information:

🩸 IPOPI at HTAi 2025 – Advocating for Access to Life-Saving Therapies We’re happy to share that Roberta Anido de Pena, IPOPI Board Member, has represented the patient community at Health Technology Assessment international (HTAi) 2025, speaking on the challenges of value

📢 On June 28, we unite to raise awareness on the critical importance of newborn screening in giving all children a healthy start in life. Dr Tabatadze joins the global call for early diagnosis and equal access to screening for all newborns, everywhere. Watch and share her

🌍 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

In 2021, only 27% of babies born around the world were screened at birth Despite its potential to diagnose many treatable diseases, there are still many inequities when it comes to access to neonatal screening 👉 That's why we celebrate International Neonatal Screening Day

🌞 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

💡 Did you know? Behind every life-changing breakthrough in PKU lies the story of a pioneering register and the dedicated experts who made it possible. As #INSD approaches on June 28, join us in celebrating this inspiring story! #INSD2025 #HiddenFigures

✨ Are you driven to advance research in immunodeficiencies? Seize the opportunity with the IPOPI Jose Drabwell Research Grant Programme! 💡 Scope: Projects should be patient-centred and knowledge-generating. 🌍 Who can apply: Researchers, clinicians, nurses, HCPs, and patient

📅 In anticipation of Neonatal Screening Day, we share a message from Soporan Andreea, highlighting the importance of continued progress, collaboration, and commitment to expanding access to life-saving early diagnostics. #INSD2025 #NewbornScreeningSavesLives #INSD

Have you already checked our "In Focus" article? Learn how the Immune Deficiency Foundation (USA) is supporting PI caregivers with a new Compassion & Connection Guide. 📖 Read more: e-news.ipopi.org #IPOPI #SummerNewsletter #PrimaryImmunodeficiency

🌟 We were happy to join the EU Medicines Agency in celebrating 30 years of advancing medicines and regulatory science at their anniversary scientific conference in Amsterdam! The event gathers key voices from across Europe and beyond — from European institutions, regulatory networks,

🧬 Prof Milos Brkusanin from the Faculty of Biology in Belgrade shares his perspective on the value of genetic testing and the growing potential of early diagnostics in saving lives. 📅 Don’t miss his message as we mark the importance of Neonatal Screening Day. #INSD2025

🌐 On the morning of June 25, IPOPI representatives had the privilege of visiting Kenyatta National Hospital (Kenyatta University Hospital (KUTRRH)). A cornerstone of healthcare in Kenya. The visit included: 🔹 A warm welcome and introductory meeting with the hospital administration 🔹 A guided tour of the