ERDERA

🚀 Want to lead the way in #RareDisease research? Subscribe to #ERDERA’s newsletter! 📩 ✅ Big news first ✅ Expert tips & tools ✅ Breakthroughs that matter ✅ Community highlights Subscribe at 👉 https://loom.ly/NxMGydc

💡 What is PPIE — and why is it such a central concept in ERDERA? Our latest Knowledge Pill explores Patient and Public Involvement and Engagement (PPIE): what it is, why it matters, who is involved, and how #ERDERA puts it into practice. 🔗 Find out more: https://loom.ly/FWzBQpg #RareDiseases

📬 Missed the ERDERA newsletter? Catch up on the latest updates and highlights from across ERDERA and the rare disease research community. Read it here 👉 https://loom.ly/7VjkRXs 📩 Don’t miss the next issue, subscribe now: https://loom.ly/TFRXEBY #ERDERA #RareDiseases

Patients are the glue holding the whole system together—without them, it simply wouldn’t exist. 👉 ERDERA speaks with Bojana Mirosavljevic, advocate behind Zoya’s Law in Serbia, on why patient voices must shape research & policy from day one. 🔗 Read more: https://loom.ly/vxcS4lo

💡 New ERDERA Knowledge Pill! What are ATMPs and how are they changing how we think about treatment, especially for people living with rare diseases? 🔎 Learn more: https://loom.ly/pjOwax0 #ATMPs #AdvancedTherapies #RareDiseases #ERDERA

🔬 How do we improve diagnosis for people with undiagnosed conditions? 📅 30 April | #UndiagnosedDay 2026 🌟 Expert & lived‑experience panellists 👉 View the agenda and register: https://loom.ly/DbXzw0E #RareDiseases #Diagnosis #HealthPolicy

🌍 European Reference Networks (#ERNs) connect rare disease experts across Europe. Within #ERDERA, ERNs help bring clinicians, researchers & patients together to share knowledge, advance research and improve care where it’s needed most. Expertise, connected. 💙 #RareDiseases

💡 New ERDERA Knowledge Pill! What are National Mirror Groups (NMGs) and how do they strengthen collaboration in the rare disease ecosystem? 🔎 Discover their role within the #ERDERA: https://loom.ly/TvHDtK8 #RareDiseases #EUResearch #HealthResearch

🌍 Today is #RareDiseaseDay! ERDERA, the European Rare Diseases Research Alliance, joins the campaign to raise awareness for the 300M people living with a rare disease, and advocate for better care, research, and collaboration 🚀 #RareDiseases #Advocacy #EUHealth #EUInnovation

That’s a wrap on the 2nd International CRN Conference for Rare Diseases! 🎉Thank you to all who joined onsite and online — your contributions strengthen collaboration and evidence generation across the rare disease community 🤝 Highlights here: https://loom.ly/XQCqGOg #ERDERA #RareDiseases

🚀 Not long to go for the 2nd International Conference on Clinical Research Networks! 🚀 A key global event on clinical research networks, with great speakers & chairs lined up! Full programme & registration👉 https://loom.ly/1fhf8zI 🚨 Limited in-person spots available!

That’s a wrap on an inspiring #WODC2025! 🌍 The #ERDERA team joined panels, sparked valuable exchanges, and connected with many eager to collaborate and contribute to advancing #RareDisease research in Europe. 💬 Let’s keep the momentum going! 💪 #OrphanDrugs #WODC