RealiseD
@realised-ihi.bsky.social
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📥 42
📝 61
Transforming Clinical Trials for Ultra-Rare Diseases. đź”—
https://realised-ihi.eu/
pinned post!
🚀 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
over 1 year ago
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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
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4 days ago
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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
#ClinicalTrialsDay
#RareDiseases
5 days ago
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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
đź‘€
#ClinicalResearch
#RareDiseases
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18 days ago
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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
about 1 month ago
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📬 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
đź“© Subscribe to receive future editions straight to your inbox.
#RealiseD
#RareDiseases
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about 1 month ago
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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
#RealiseD
#RareDiseases
about 1 month ago
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🔬 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
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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...
https://realised-ihi.eu/rethinking-clinical-trials-for-rare-diseases-the-impact-of-the-realised-webinar-series/
about 1 month ago
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🔬 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
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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)...
https://realised-ihi.eu/why-early-alignment-matters-in-rare-disease-evidence-an-expert-point-of-view/
about 2 months ago
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📍 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
about 2 months ago
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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
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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…
https://health.ec.europa.eu/medical-devices-expert-panels/experts/expert-panels_en
2 months ago
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🤝 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
3 months ago
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💫 #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
#RareDiseaseDay
3 months ago
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🌍 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
3 months ago
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✨ #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
#RareDiseaseDay
3 months ago
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✨“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
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- YouTube
Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.
https://www.youtube.com/watch?v=FfuZNtHs6eg&t
3 months ago
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🌟 #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
#RareDiseaseDay
3 months ago
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🌍 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
#RareDiseaseDay
3 months ago
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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!
3 months ago
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🚨 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
3 months ago
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🌍 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🔗
https://loom.ly/hNPsTj8
#RealiseD
#RareDiseases
#ClinicalTrials
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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
https://realised-ihi.eu/realised-consortium-gathers-in-barcelona-to-drive-forward-innovative-clinical-trials-for-rare-diseases/
3 months ago
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🔜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:
https://loom.ly/x7nX9qI
3 months ago
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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:
https://loom.ly/hNPsTj8
#RealiseD
#RareDiseases
#ClinicalTrials
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4 months ago
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🌟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:
https://loom.ly/PCwqY8A
4 months ago
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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 🤝
4 months ago
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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! 🤝 🔗
https://loom.ly/kbbWwBk
#RareDisease
#ClinicalTrials
#Survey
4 months ago
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💥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:
https://loom.ly/PCwqY8A
4 months ago
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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
#RealiseD
#RareDiseases
4 months ago
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📣 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:
https://loom.ly/XCZkF2w
4 months ago
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🚀 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:
https://loom.ly/rJ5A7Ik
5 months ago
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🚀 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👇
https://loom.ly/E2cmGmM
#RealiseD
#RareDiseases
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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...
https://realised-ihi.eu/realised-webinars-driving-innovation-in-rare-disease-clinical-trials/
5 months ago
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🚀 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
5 months ago
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🌟 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
5 months ago
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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
5 months ago
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🚀 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
5 months ago
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🚀 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:
https://loom.ly/rJ5A7Ik
5 months ago
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🚀 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
6 months ago
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👉 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
#WODC
7 months ago
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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
7 months ago
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🎉 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
7 months ago
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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
#RealiseD
#RareDiseases
7 months ago
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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
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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.
https://realised-ihi.eu/realised-to-join-efgcp-better-medicines-for-children-conference-2025/
7 months ago
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🎤 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 🚀
7 months ago
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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
#WODC2025
8 months ago
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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
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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.
https://loom.ly/EXa9SHQ
8 months ago
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🎙️ 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
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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...
https://loom.ly/wwrM7pM
11 months ago
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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
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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
https://loom.ly/UNis4XE
12 months ago
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📣 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
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about 1 year ago
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🤔 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
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about 1 year ago
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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
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about 1 year ago
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📣 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
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about 1 year ago
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