RealiseD
@realised-ihi.bsky.social
Transforming Clinical Trials for Ultra-Rare Diseases.
🔗 https://realised-ihi.eu/
🔗 https://realised-ihi.eu/
Pinned
RealiseD
@realised-ihi.bsky.social
· Jan 9
🚀 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
👩🏽🔬 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
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 #ClinicalTrials
February 5, 2026 at 7:32 AM
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 #ClinicalTrials
🌟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
Register here: https://loom.ly/PCwqY8A
February 2, 2026 at 9:01 AM
🌟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
Register here: https://loom.ly/PCwqY8A
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 🤝
January 28, 2026 at 2:08 PM
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 🤝
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
🔗 https://loom.ly/kbbWwBk
#RareDisease #ClinicalTrials #Survey
January 22, 2026 at 10:30 AM
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
🔗 https://loom.ly/kbbWwBk
#RareDisease #ClinicalTrials #Survey
💥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
Register here: https://loom.ly/PCwqY8A
January 19, 2026 at 9:01 AM
💥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
Register here: https://loom.ly/PCwqY8A
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
Find out more: https://loom.ly/AxssNo0 #RareDiseases
January 13, 2026 at 11:02 PM
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
Find out more: https://loom.ly/AxssNo0 #RareDiseases
📣 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
Register: https://loom.ly/XCZkF2w
January 12, 2026 at 9:01 AM
📣 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
Register: https://loom.ly/XCZkF2w
🚀 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
🔒 Strictly anonymous
🗓️ Open till 28 January 2026
👉 All the info: https://loom.ly/rJ5A7Ik
January 8, 2026 at 11:01 PM
🚀 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
🔒 Strictly anonymous
🗓️ Open till 28 January 2026
👉 All the info: https://loom.ly/rJ5A7Ik
🚀 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 #RareDiseases
Register now👇 https://loom.ly/E2cmGmM #RareDiseases
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...
realised-ihi.eu
January 8, 2026 at 9:23 AM
🚀 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 #RareDiseases
Register now👇 https://loom.ly/E2cmGmM #RareDiseases
🚀 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
January 7, 2026 at 10:01 AM
🚀 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
🌟 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
#NewYear #RareDiseases #Innovation
January 2, 2026 at 2:03 PM
🌟 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
#NewYear #RareDiseases #Innovation
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
Read the full article 👉https://loom.ly/rDFM6bM
December 19, 2025 at 3:54 PM
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
Read the full article 👉https://loom.ly/rDFM6bM
🚀 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
December 18, 2025 at 8:31 AM
🚀 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
🚀 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
🔒 Strictly anonymous
🗓️ Open till 28 January 2026
👉 All the info: https://loom.ly/rJ5A7Ik
December 17, 2025 at 9:49 AM
🚀 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
🔒 Strictly anonymous
🗓️ Open till 28 January 2026
👉 All the info: https://loom.ly/rJ5A7Ik
🚀 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
🚀 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
👉 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
👉 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
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
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
🎉 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
📢 Workshop insights coming soon on our website—stay tuned!
#RareDiseases #OrphanDrugs #RealiseD
October 27, 2025 at 11:40 AM
🎉 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
📢 Workshop insights coming soon on our website—stay tuned!
#RareDiseases #OrphanDrugs #RealiseD
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
Find out more: https://loom.ly/AxssNo0 #RareDiseases
October 22, 2025 at 6:46 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
Find out more: https://loom.ly/AxssNo0 #RareDiseases
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
📅 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
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
📅 21–22 Oct | Amsterdam & online
🔗 Read more: https://loom.ly/KwLN6lw #RealiseD
🎤 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
🎤 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 🚀
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
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
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
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
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
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
🎙️ 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
🎙️ 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
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
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