🔍 Did you know that six European Reference Networks (ERNs) are helping shape the future of rare disease clinical trials through RealiseD? 🔍 Learn more about ERNs and their role in the project: https://loom.ly/8uvU3Ms #RealiseD #RareDiseases #ERNs #ClinicalTrials #HealthInnovation

🎉First RealiseD publication available! The assessment of randomisation methods used in clinical trials to minimise bias. 📰Read it: https://loom.ly/iSuP3KE 🔓Access article: https://doi.org/10.1371/journal.pone.0339427 #RareDiseases @ihieurope.bsky.social

💪Driven by Purpose Alicia Granados represented RealiseD at #BIO2026. Highlights: 🫂Global collaboration is essential to develop new methodologies for #RD and #URD 📏Strategic initiatives are shaping the new regulatory frameworks 👉Read the full story: https://loom.ly/tWbpukk #RealiseD #IHI

⏳ Only a few days left! Help us improve patient recruitment by sharing your experience with EHRs. You will contribute to shaping the future use of EHR data in patient recruitment. 👉Have your say and take part in our survey: https://loom.ly/yhikHF8 #RareDiseases #ClinicalTrials #IHI #RealiseD #ERN

Meet Nico Bruder, an Early Career Researcher in RealiseD. 🎓Nico is doing his PhD in Statistics at the Medizinische Universität Wien with Franz König. He studies how to make clinical trials more meaningful for #RareDiseases 👉Read more about Nico's journey: https://loom.ly/CZ_Mi0o #RealiseD #IHI

🔬 Are you involved in rare disease clinical trials? Help RealiseD improve patient recruitment. We are looking for clinicians, data managers & healthcare professionals using EHRs in real-world settings 👉Take part in our survey: https://loom.ly/yd9sIAU #RareDiseases #ClinicalTrials #IHI #RealiseD

RealiseD at the #EHA2026 in Stockholm! 🌍 Mar Mañú (@vhir.bsky.social) highlighted the importance of building a patient-centred ecosystem 🤖Matteo Della Porta (Humanitas Research Hospital), the transformative role of innovative technologies in advancing care. #RareDiseases #ClinicalTrials #IHI

👉 Why is it essential to build clinical trials for rare and ultra-rare diseases around patients? What is the added value of investing in this type of research? 🎥 Rita Francisco (EURORDIS) shares expert insights in this video👇 https://loom.ly/nTYZ_Hc

RealiseD at the 6th CEN Conference in Warsaw Christoph Gerlinger (Bayer) presented RealiseD’s vision during the poster session. In the picture with Lars Beckmann from IQWiG also a member of the project. 👉 Discover Christophe’s latest poster: https://loom.ly/bmfuFLo

🔬Two weeks ago, we joined #CTD2026 highlighting the challenges of enrolling patients with #RareDiseases in clinical trials. Here's the recap: https://loom.ly/55QG9W4 #RealiseDProject

Be part of the change in rare disease research! 🧬✨ Subscribe to the #RealiseD newsletter for the latest updates on how we’re rethinking clinical trials for rare and ultra-rare diseases across Europe. 👉 https://loom.ly/98ISTm8 Find out more: https://loom.ly/AxssNo0 #RareDiseases

Today is #ClinicalTrialsDay! 🔬 📍 Clinical trials are key to advancing treatments, but in rare & ultra-rare diseases, small and dispersed populations pose major challenges. RealiseD promotes patient-centred, multi-stakeholder approaches. 🎥 Watch to find out how: https://loom.ly/x7yhyJU

Tomorrow is #ClinicalTrialsDay 🔬 At RealiseD, we are sharing the perspective of Inês Alves, a patient advocate involved in the project, on why clinical trials are especially important in the field of rare diseases. 📲 View the full interview: https://loom.ly/QGXb9PY #RareDiseases

2 weeks to go until #ClinicalTrialsDay 🔬 Celebrating the people behind clinical trials, and the progress they make possible. Stay tuned for new insights from #RealiseD👀 #ClinicalResearch #RareDiseases

Rare disease trials don’t always fail in the lab - they often fail at enrolment🔬 RealiseD’s first multi‑stakeholder meeting united patients, clinicians, researchers and industry to close the gap. Read the article for key discussion points and next steps 👉 loom.ly/4zTJx7A #RealiseD #ClinicalTrials

📬 Missed the first RealiseD newsletter? Catch up on project highlights, practical resources & insights from the (ultra) rare disease research community 👉 Read it here: https://loom.ly/7kfj30U 📩 Subscribe to receive future editions straight to your inbox. #RealiseD #RareDiseases

Be part of the change in rare disease research! 🧬✨ Subscribe to the #RealiseD newsletter for the latest updates on how we’re rethinking clinical trials for rare and ultra-rare diseases across Europe. 👉 https://loom.ly/98ISTm8 Find out more: https://loom.ly/AxssNo0 #RareDiseases

🔬 Rethinking clinical trials for rare diseases 🌍 The RealiseD webinar series united the global rare disease community, with 1,150+ registrations worldwide, to explore more adapted, patient‑centred trial designs 🚀 Read the full article 👇https://loom.ly/edJ6hRQ

Rethinking clinical trials for rare diseases: The impact of the RealiseD webinar series - Realise D

Held between January and February 2026, the RealiseD webinar series attracted more than 1,150 participants from across the rare disease...

realised-ihi.eu

🔬 In rare disease research, collaboration matters. Transparent, science‑driven work between regulators, HTA bodies and industry helps deliver timely innovation. Alicia Granados explains how RealiseD fosters early dialogue while protecting independence. Full article 👉 https://loom.ly/wRadmrQ

Why early alignment matters in rare disease evidence: An expert point of view - Realise D

In rare disease research, the rules of engagement matter. As clinical trials grow increasingly complex, Health Technology Assessment (HTA)...

realised-ihi.eu

📍 Yesterday the RealiseD Playbook team met yesterday at the European Medicines Agency to exchange ideas on making the project’s Playbook relevant and useful. Early discussions like these help ensure different perspectives are considered from the start. 🤝 #RealiseD #ClinicalTrials #RareDiseases

Congratulations to Professor Luca Sangiorgi! 🌟 Appointed to the European Commission’s new Paediatrics and Rare Diseases Expert Panel, Luca strengthens RealiseD’s mission. His role in the orphan medical device programme highlights his impact and leadership. https://loom.ly/4b5FJkE

Expert panels

Alphabetical list of the experts appointed by the Commission as advisors to expert panels in the field of medical devices designated by Commission…

health.ec.europa.eu

🤝 On #RareDiseaseDay, RealiseD stood with millions affected by rare conditions. The project launched an article to rethink patient-centric clinical trials—making research more inclusive, practical, and truly responsive to real needs. 👉 Read the full text: https://loom.ly/-MqhiT0

💫 #RareDiseaseDay reminds us that real progress depends on partnering with patients. Their lived experience shapes better designs, endpoints, and feasibility. At #RealiseD, we co‑create rare disease trials so research is truly practical, and patient‑centred 🤝 Learn more: https://loom.ly/6HpREX0

🌍 Most rare conditions still lack treatments, and everything starts with the lack of adapted clinical trials. RealiseD webinars, featured on the Springer Nature Community, call for smarter, patient-centred trial designs #rarediseaseday 👉 Read the full article: https://loom.ly/PAv77oY

✨ #RareDiseaseDay highlights the need to redesign trials for small, dispersed populations. Smarter recruitment, digital tools, and decentralised models can cut burden and boost access. Learn how: https://loom.ly/6HpREX0

✨“Clinical trials must serve people with rare diseases. This Rare Disease Month, patient advocate Inês Alves reminds us that research should adapt to patients. Her voice reflects a Europe‑wide call for more inclusive, responsive, patient‑centred trials.” Full interview: https://loom.ly/pLxADGo

🌟 #RareDiseaseDay highlights the need for innovation in rare research. AI, data science, and digital health can make trials more inclusive, efficient, and empowering. At RealiseD, we’re driving technology‑led progress for the rare community💡 Discover more: https://loom.ly/6HpREX0

🌍 On the #RareDiseaseDay we stand with people living with rare and conditions. With therapies for only ~5% of rare diseases, patient‑centred trials are vital. #RealiseD is committed to advancing innovative, equitable research for the rare community 💜 Learn more: https://loom.ly/6HpREX0

Today we thank Heidrun Hildebrand as she steps into retirement. Her dedication, insight, and collaborative approach have played an important role in #RealiseD.🤝 We wish you all the best in this next chapter!

🚨 Last call! Share your insights to improve #RareDisease #ClinicalTrial enrolment. The RealiseD survey closes 15 Feb 2026. All responses are anonymous—help make trials more inclusive and effective. 👉 Take the survey: https://loom.ly/kbbWwBk