Sign in

RealiseD

@realised-ihi.bsky.social
69 followers 42 following 73 posts

Transforming Clinical Trials for Ultra-Rare Diseases. 🔗 realised-ihi.eu

PostsRepliesMedia
RealiseD @realised-ihi.bsky.social · 01/10/2026
Last week, at K-Channelopathies 2026 Symposium, to discuss the latest advances in #RareEpilepsies and K-channelopathies. 🗣️Ralf-Dieter Hilgers: “The meeting was a stimulation with regards to new developments” 🔗Learn about the link between #RealiseD and #RareEpilepsies: loom.ly/8uvU3Ms
000
RealiseD @realised-ihi.bsky.social · 21/09/2026
🔍 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: loom.ly/8uvU3Ms #RealiseD #RareDiseases #ERNs #ClinicalTrials #HealthInnovation
011
RealiseD @realised-ihi.bsky.social · 08/09/2026
🎉First RealiseD publication available! The assessment of randomisation methods used in clinical trials to minimise bias. 📰Read it: loom.ly/iSuP3KE 🔓Access article: doi.org/10.1371/journal.pone.0339427 #RareDiseases @ihieurope.bsky.social
011
RealiseD @realised-ihi.bsky.social · 22/07/2026
💪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: loom.ly/tWbpukk #RealiseD #IHI
000
RealiseD @realised-ihi.bsky.social · 07/07/2026
⏳ 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: loom.ly/yhikHF8 #RareDiseases #ClinicalTrials #IHI #RealiseD #ERN
011
RealiseD @realised-ihi.bsky.social · 30/06/2026
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: loom.ly/CZ_Mi0o #RealiseD #IHI
030
RealiseD @realised-ihi.bsky.social · 25/06/2026
🔬 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: loom.ly/yd9sIAU #RareDiseases #ClinicalTrials #IHI #RealiseD
012
RealiseD @realised-ihi.bsky.social · 24/06/2026
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
000
RealiseD @realised-ihi.bsky.social · 18/06/2026
👉 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👇 loom.ly/nTYZ_Hc
011
RealiseD @realised-ihi.bsky.social · 04/06/2026
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: loom.ly/bmfuFLo
000
RealiseD @realised-ihi.bsky.social · 02/06/2026
🔬Two weeks ago, we joined #CTD2026 highlighting the challenges of enrolling patients with #RareDiseases in clinical trials. Here's the recap: loom.ly/55QG9W4 #RealiseDProject
011
RealiseD @realised-ihi.bsky.social · 26/05/2026
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. 👉 loom.ly/98ISTm8 Find out more: loom.ly/AxssNo0 #RareDiseases
021
RealiseD @realised-ihi.bsky.social · 20/05/2026
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: loom.ly/x7yhyJU
001
RealiseD @realised-ihi.bsky.social · 19/05/2026
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: loom.ly/QGXb9PY #RareDiseases
001
RealiseD @realised-ihi.bsky.social · 06/05/2026
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
000
RealiseD @realised-ihi.bsky.social · 23/04/2026
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
000
RealiseD @realised-ihi.bsky.social · 22/04/2026
📬 Missed the first RealiseD newsletter? Catch up on project highlights, practical resources & insights from the (ultra) rare disease research community 👉 Read it here: loom.ly/7kfj30U 📩 Subscribe to receive future editions straight to your inbox. #RealiseD #RareDiseases
000
RealiseD @realised-ihi.bsky.social · 16/04/2026
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. 👉 loom.ly/98ISTm8 Find out more: loom.ly/AxssNo0 #RareDiseases
000
RealiseD @realised-ihi.bsky.social · 09/04/2026
🔬 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
realised-ihi.eu
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...
011
RealiseD @realised-ihi.bsky.social · 30/03/2026
🔬 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 👉 loom.ly/wRadmrQ
realised-ihi.eu
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)...
011
RealiseD @realised-ihi.bsky.social · 27/03/2026
📍 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
011
RealiseD @realised-ihi.bsky.social · 24/03/2026
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. loom.ly/4b5FJkE
health.ec.europa.eu
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…
010
RealiseD @realised-ihi.bsky.social · 02/03/2026
🤝 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: loom.ly/-MqhiT0
011
RealiseD @realised-ihi.bsky.social · 27/02/2026
💫 #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: loom.ly/6HpREX0
010
RealiseD @realised-ihi.bsky.social · 26/02/2026
🌍 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: loom.ly/PAv77oY
012
RealiseD @realised-ihi.bsky.social · 25/02/2026
✨ #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: loom.ly/6HpREX0
001
RealiseD @realised-ihi.bsky.social · 24/02/2026
✨“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: loom.ly/pLxADGo
youtube.com
- YouTube
Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.
001
RealiseD @realised-ihi.bsky.social · 23/02/2026
🌟 #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: loom.ly/6HpREX0
021
RealiseD @realised-ihi.bsky.social · 20/02/2026
🌍 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: loom.ly/6HpREX0
010
RealiseD @realised-ihi.bsky.social · 19/02/2026
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!
010
RealiseD @realised-ihi.bsky.social · 12/02/2026
🚨 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: loom.ly/kbbWwBk
021
RealiseD @realised-ihi.bsky.social · 10/02/2026
🌍 Read the key takeaways from RealiseD General Assembly Meeting, held on January 28–29, featuring insights from the RealiseD coordinator, patient advocate representative, and more🔗 loom.ly/hNPsTj8 #RealiseD #RareDiseases #ClinicalTrials
realised-ihi.eu
RealiseD consortium gathers in Barcelona to drive forward innovative clinical trials for rare diseases - Realise D
RealiseD second General Assembly Meeting, held on January 28–29, brought together over 100 participants from the public and private sectors to assess first-year progress and define upcoming priorities, reaffirming their commitment to co-creation principles and transformative goals The striking Recinte Modernista de Sant Pau in Barcelona provided the perfect backdrop to RealiseD second General
021
RealiseD @realised-ihi.bsky.social · 09/02/2026
🔜Last call to register! Join us on 10 Feb at 17:00 CET for the RealiseD webinar on enhancing patient‑centricity in rare disease trials. Rudradev Sengupta will share methods to embed patient voices and align benefit–risk with what matters most. Register here: loom.ly/x7nX9qI
002
RealiseD @realised-ihi.bsky.social · 05/02/2026
Highlights from last week’s #RealiseD General Assembly Meeting 🎬💫 Two days of collaboration and shared ambition to advance innovative tools for (ultra) #RareDiseases in Europe and beyond. 🔬 Watch the reel to hear key insights and 🔗 read more: loom.ly/hNPsTj8 #ClinicalTrials
011
RealiseD @realised-ihi.bsky.social · 02/02/2026
🌟Last call to register! Join us on 3 Feb at 17:00 CET for the RealiseD webinar on enriching clinical trial design in rare diseases. We’ll explore SATs, innovative methods, and real‑world evidence with leading experts! Register here: loom.ly/PCwqY8A
011
RealiseD @realised-ihi.bsky.social · 28/01/2026
Kicking off the #RealiseD General Assembly Meeting 🚀 One year on from the launch of this public–private partnership, nearly 40 partners have come together to reflect on progress in advancing the design and delivery of clinical trials for rare and ultra-rare diseases. Stay tuned for key insights 🤝
041
RealiseD @realised-ihi.bsky.social · 22/01/2026
Help to improve patient enrolment in rare & ultra‑rare disease trials! RealiseD’ s launching a quick, anonymous survey that welcomes clinicians, researchers, industry, regulators, sponsors & patient advocates! It takes 2 minutes! 🤝 🔗 loom.ly/kbbWwBk #RareDisease #ClinicalTrials #Survey
001
RealiseD @realised-ihi.bsky.social · 19/01/2026
💥Last call to register! Join us on 20 Jan at 17:00 CET for the RealiseD webinar on evidence assessment in rare diseases. François Meyer will discuss why current frameworks fall short and the mindset shift needed across stakeholders. Register here: loom.ly/PCwqY8A
001
RealiseD @realised-ihi.bsky.social · 13/01/2026
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. 👉 loom.ly/98ISTm8 Find out more: loom.ly/AxssNo0 #RareDiseases
031
RealiseD @realised-ihi.bsky.social · 12/01/2026
📣 Last call to register! Join us on 13 Jan at 17:00 CET for the RealiseD webinar on advancing clinical trials in ultra‑rare diseases. Professor Dieter Hilgers will share insights and solutions shaping future research! Register: loom.ly/XCZkF2w
000
RealiseD @realised-ihi.bsky.social · 08/01/2026
🚀 RealiseD is launching a survey to identify what drives enrolment in #ClinicalTrials across rare & ultra‑rare conditions. Open to HCPs, academia, industry, regulators, sponsors & patient advocates! 🔒 Strictly anonymous 🗓️ Open till 28 January 2026 👉 All the info: loom.ly/rJ5A7Ik
031
RealiseD @realised-ihi.bsky.social · 08/01/2026
🚀 Start 2026 with fresh insights! Join #RealiseD’s webinar series (13 Jan–10 Feb) on innovative clinical trials in rare diseases. Learn key design principles, regulatory strategies, and patient-centric approaches from leading experts. Register now👇 loom.ly/E2cmGmM #RareDiseases
realised-ihi.eu
RealiseD Webinars: Driving Innovation in Rare Disease Clinical Trials - Realise D
The RealiseD project will host a series of four-part webinars that will focus on key topics aimed at reshaping the landscape of clinical...
000
RealiseD @realised-ihi.bsky.social · 07/01/2026
🚀 Start 2026 with fresh insights! We are launching a new webinar series on innovative clinical trials in #RareDiseases! Starting on the 13 Jan, join expert-led sessions on ultra-rare trial design, regulatory & HTA pathways, and patient-centred methods. Read more & sign up 👉 loom.ly/E2cmGmM
010
RealiseD @realised-ihi.bsky.social · 02/01/2026
🌟 Happy New Year from Realised Project! In 2026, we continue advancing our goal of reimagining how clinical trials for (ultra) rare diseases are designed and conducted! #NewYear #RareDiseases #Innovation
040
RealiseD @realised-ihi.bsky.social · 19/12/2025
Europe’s rare disease community met in Brussels to reimagine clinical trials. At the High-Level Meeting 2025, RealiseD highlighted patient-centred, feasible and trustworthy trials as key to EU leadership! Read the full article 👉https://loom.ly/rDFM6bM
020
RealiseD @realised-ihi.bsky.social · 18/12/2025
🚀 Start 2026 with fresh insights! We are launching a new webinar series on innovative clinical trials in #RareDiseases! Starting on the 13 Jan, join expert-led sessions on ultra-rare trial design, regulatory & HTA pathways, and patient-centred methods. Read more & sign up 👉 loom.ly/E2cmGmM
011
RealiseD @realised-ihi.bsky.social · 17/12/2025
🚀 RealiseD is launching a survey to identify what drives enrolment in #ClinicalTrials across rare & ultra‑rare conditions. Open to HCPs, academia, industry, regulators, sponsors & patient advocates! 🔒 Strictly anonymous 🗓️ Open till 28 January 2026 👉 All the info: loom.ly/rJ5A7Ik
033
RealiseD @realised-ihi.bsky.social · 09/12/2025
🚀 Start 2026 with fresh insights! We are launching a new webinar series on innovative clinical trials in #RareDiseases! Starting on the 13 Jan, join expert-led sessions on ultra-rare trial design, regulatory & HTA pathways, and patient-centred methods. Read more & sign up 👉 loom.ly/E2cmGmM
011
RealiseD @realised-ihi.bsky.social · 04/11/2025
👉 Last week RealiseD participated in the #WODC 2025, showcasing how the project is redefining clinical trials for rare and ultra-rare diseases through patient integration, multistakeholder collaboration, and innovative trial designs. 🔗 Read the full summary: loom.ly/qdPHrtY
001
RealiseD @realised-ihi.bsky.social · 29/10/2025
At #WODC, Ralf-Dieter Hilgers, RealiseD Coordinator from Sigmund Freud Private University, presented the paradigm shift RealiseD is leading in #UltraRareDisease research. 💡This will take shape in Playbooks—practical guides for better, fairer clinical trials. #RareDisease #RealiseD #OrphanDrugs
011