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realised-ihi.bsky.social
RealiseD
@realised-ihi.bsky.social
Transforming Clinical Trials for Ultra-Rare Diseases.
🔗 https://realised-ihi.eu/
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🚀 Launching the IHI RealiseD Project: A New Era for Rare & Ultra-Rare Disease Research! 🌍
👩🏽‍🔬 With 40+ partners and a €17M budget, #RealiseD aims to accelerate treatments for over 30M people in Europe living with a #RareDisease, ensuring no patient is left behind! 🤝
🔗 Stay tuned! #IHI loom.ly/Kp7fkk8
🚀 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 👉 https://loom.ly/E2cmGmM
December 9, 2025 at 12:20 PM
👉 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: https://loom.ly/qdPHrtY
November 4, 2025 at 8:15 AM
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
October 29, 2025 at 2:17 PM
🎉 Hello #WODC2025! RealiseD, ERDERA & Inventis kicked things off with the congress’s largest workshop on accelerating rare disease drug development.
📢 Workshop insights coming soon on our website—stay tuned!
#RareDiseases #OrphanDrugs #RealiseD
October 27, 2025 at 11:40 AM
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
October 22, 2025 at 6:46 AM
Partners from RealiseD will join the EFGCP “Better Medicines for Children” Conference 2025, contributing insights on advancing and optimising orphan medicine development. 👧🧬
📅 21–22 Oct | Amsterdam & online
🔗 Read more: https://loom.ly/KwLN6lw #RealiseD
RealiseD to join EFGCP “Better Medicines for Children” Conference 2025 - Realise D
Rima Nabbout will introduce the RealiseD during the EFGCP “Better Medicines for Children” Conference 2025.
realised-ihi.eu
October 17, 2025 at 1:51 PM
🎤 Vinciane Pirard (Scientific Advocacy & Insights, Global Medical Affairs – Rare Diseases, #Sanofi) presented the #RealiseD IHI project at the #IRDiRC Consortium Assembly this week! Proud to see our partners advancing innovation in #RareDiseases and orphan medicine development 🚀
October 16, 2025 at 3:07 PM
RealiseD is joining #WODC2025! 🚀
We are contributing with workshops on 27 Oct:
🧬 10:00 – Innovative methodological approaches accelerating rare disease drug development (with #ERDERA & #INVENTS)
🤝 14:00 – Public Private Partnerships in Rare Disease (with #Sanofi)
🔗 https://loom.ly/6CbdWIA
October 10, 2025 at 7:57 AM
Two weeks ago, the RealiseD project held a workshop in Amsterdam on playbooks to accelerate rare disease clinical trials. Collaborating across Europe, we’re building practical, patient-centred tools to strengthen trial readiness. Read more: 🔗 loom.ly/EXa9SHQ 🌟 #RareDiseases #RealiseD #clinicaltrials
RealiseD workshop recap: Defining scope & goals for the playbook - Realise D
On September 4, 2025, the RealiseD project brought together participants for a full-day workshop at Sanofi Nederland, Amsterdam, to define the scope, goals, and user focus of the forthcoming Playbook.
loom.ly
September 30, 2025 at 7:52 AM
🎙️ Many voices, one #RealiseD goal: improve #ClinicalTrials for #RareDiseases 👉On 16 June, we launched our first #PatientEngagement webinar—bringing patients, researchers, regulators & industry to co-create better trial designs.🔗 More: loom.ly/wwrM7pM | @ihieurope.bsky.social @eurordis.bsky.social
Many voices, one RealiseD goal: improving clinical trials in rare diseases - Realise D
RealiseD project launched its first patient engagement webinar, marking the debut of the patient and multi-stakeholder dialogue to reshape how clinical trials are designed for rare and ultra-rare dise...
loom.ly
July 1, 2025 at 12:50 PM
Last week we marked #ClinicalTrialsDay with voices from patients, researchers, regulators & industry—reflecting on how trials in rare diseases are evolving. 💡 Missed it? Catch the wrap-up with key insights & a unifying message👉 loom.ly/UNis4XE #RareDiseases #ClinicalResearch
Clinical Trials Day 2025: A collective vision for rare disease research - Realise D
RealiseD joined Clinical Trials Day with a campaign featuring a diverse group of voices—patients, regulators, researchers, and industry leaders
loom.ly
May 28, 2025 at 7:25 AM
📣 This #ClinicalTrialsDay week, we've shared key voices in research — from patients to industry. ✨ Today, we close with insights from Kristina AN HAACK, #Sanofi Global Project Head & RealiseD partner. 👇See her perspective in the video below! #RealiseDproject #RareDiseases #PatientVoices
May 22, 2025 at 11:28 AM
🤔 What is the perspective of regulators on clinical trials? What role do they play? 🔬 To mark #ClinicalTrialsDay, we’re spotlighting four key voices—today it’s the regulators’ turn. 👇 Hear from Andrew Thomson @ema.europa.eu on how regulation shapes clinical research.
#RealiseDproject #RareDiseases
May 21, 2025 at 11:33 AM
Today is International #ClinicalTrialsDay 2025! 🔬 We celebrate the dedication of researchers & patients who drive medical breakthroughs.
✨ This week, discover insights from patients, researchers, regulators & industry.
👇 Today: #Researcher Ralf Dieter’s perspective. #RealiseD @sfu.ac.at
May 20, 2025 at 7:25 AM
📣 Tomorrow is #ClinicalTrialsDay! Let’s celebrate the impact of clinical trials and those who make them possible. This week, we’ll share voices from patients, researchers, regulators & industry. ✨ Starting with Maria Kortekaas, #patient & trial participant.👇 #RealiseDproject
May 19, 2025 at 8:17 AM
🙌 One week to go until International Clinical Trials Day 2025! 🔬 On 20 May, we honour the vital role of clinical trials and the people behind them. Stay tuned as we explore their impact from all angles! 💡
#ClinicalTrialsDay #HealthInnovation #MedicalResearch #RealiseD
May 13, 2025 at 9:24 AM
The #RealiseD project has been cited in @frontiersin.bsky.social ! 🎉 The study highlights our work in advancing clinical trial design for rare diseases, reinforcing our commitment to patient-centric innovation.
📢 Learn more at loom.ly/FP2SRtI ! #RareDiseases #ClinicalTrials
RealiseD project cited in Frontiers in Medicine: Advancing rare disease research - Realise D
RealiseD project cited in Frontiers in Medicine: Advancing rare disease research
loom.ly
March 25, 2025 at 1:15 PM
🌍💜 Today is Rare Disease Day, a moment to shine a light on the millions affected by rare and ultra-rare diseases. At RealiseD, we’re transforming clinical trials for ultra-rare conditions to accelerate treatment development and improve lives.
💡 Let’s make rare count!
#RareDiseaseDay #RealiseD
February 28, 2025 at 9:11 AM
Reposted by RealiseD
😔 Conducting clinical trials in #RareDiseases is challenging
💡 New project @realised-ihi.bsky.social plans to change this - they're targeting a paradigm shift in #ClinicalTrials for #RareDiseases
👉 europa.eu/!fQNgR8
#IHITransformingHealth #HorizonEU #RareDiseaseDay
RealiseD targets paradigm shift in clinical trials for rare diseases
The new IHI project aims to deliver tools and resources to facilitate the set-up and conduct of trials for rare and ultra-rare diseases while minimising the burden for patients.
europa.eu
February 27, 2025 at 12:34 PM
What are the biggest challenges in ultra-rare diseases?
👨‍🔬 Ralf Dieter, Scientific Coordinator of #RealiseD, shares how the initiative is tackling these challenges.
🚀 Join us on this journey to transform the lives of millions of people living with rare and #UltraRareDiseases!
February 27, 2025 at 9:21 AM
🔸This Friday is #RareDiseaseDay🔸
💬 We asked Emer Cooke, Executive Director of the @ema.europa.eu, a key partner in the RealiseD project, to share her insights on this special date. 🔬
👀 Read her message below! 👇
#RealiseD #RareDiseases #Innovation
February 26, 2025 at 10:39 AM
🌟 Spotlight on the RealiseD Project 🌟
@ihieurope.bsky.social recently published a fact sheet highlighting the RealiseD Project’s groundbreaking approach to clinical trials for ultra-rare diseases. Thank you, #IHI, for highlighting our work! 🌐 See more at: loom.ly/c5JnJBw
January 29, 2025 at 10:29 AM
🚀 A new era for clinical trials in rare diseases begins now! 🚀💫
Last week, we launched the IHI #RealiseD Project in Vienna with 40+ partners. 💙 Thanks to all who joined and made this kick-off a success!
📢 Join us on this transformative journey 🔗 loom.ly/Kp7fkk8
#RareDiseases @ihieurope.bsky.social
January 13, 2025 at 3:40 PM
🚀 The #RealiseD project launched with a keynote speech by Emer Cooke, Executive Director of #EMA🎙️ Her call for multistakeholder collaboration & focus on patient experience in rare diseases was truly inspiring. Thank you, Emer! 💫

Read more 👉 shorturl.at/IIVQe
#HealthcareInnovation #RareDiseases
EMA Director Emer Cooke Opens RealiseD with Keynote Speech
In a keynote speech to mark the launch of the RealiseD project today in Vienna, Emer Cooke, Executive Director of the European Medicines Agency (EMA), underscored the importance of ‘connecting the dot...
shorturl.at
January 10, 2025 at 9:37 AM
🚀 Launching the IHI RealiseD Project: A New Era for Rare & Ultra-Rare Disease Research! 🌍
👩🏽‍🔬 With 40+ partners and a €17M budget, #RealiseD aims to accelerate treatments for over 30M people in Europe living with a #RareDisease, ensuring no patient is left behind! 🤝
🔗 Stay tuned! #IHI loom.ly/Kp7fkk8
January 9, 2025 at 9:59 AM