📍 This week in Sofia, Teamit supported two key milestones for rare disease collaboration in Europe through its communication expertise: the first #ERDERA National Alignment Board meeting and the #IRDiRC Assembly & Scientific Committees Meeting.
🔗 Read more: https://loom.ly/KNQe0lk #Teamit
🌍 IRDiRC call for experts: Join the new 2026 roadmap activities!
Join 4 Task Forces/WGs on Digital Twins, Care Models, Data/Registries, Digital Biomarkers. Worldwide experts: researchers, clinicians, patients, regulators and the list goes on! 🔗 More: https://loom.ly/w_8lAvI #IRDiRC #RareDiseases
🚀 The 2nd International Clinical Research Networks Conference for #RareDiseases opened with an energising plenary session featuring David Pearce (#IRDiRC), Alexandra Heumber Perry (#RDI), and Daria Julkowska (#ERDERA). Excited for the discussions ahead! 📣 Stay tuned for more insights!
Announcement of a new publication on non-oncologic orphan drug approvals, focusing on evidence types and approval timelines worldwide.
📢 New #IRDiRC study on global #orphandrug approvals: it sheds light on the persistent global delays patients face in accessing innovative therapies for rare diseases.
🔗 https://go.eurordis.org/IRDiRCNewPublication
🎤 As coordinator of #REMEDi4ALL, we were proud to see the project represented at the recent #IRDiRC General Assembly in Paris, where Gauthier Bouche (Anticancer Fund) spoke on EU #DrugRepurposing initiatives and patient impact in #RareDiseases.
👉 Find out more here: https://irdirc.org
🎤 #REMEDi4ALL takes the stage at the #iRDiRC General Assembly Meeting in Paris!
Gathier Bouche from The Anticancer Fund joined a session on EU drug repurposing initiatives, where he showcased how REMEDi4ALL is advancing the repurposing of medicines.
🔗 https://irdirc.org/
🎤 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 🚀
📬 The latest IRDiRC newsletter is out!
Did you miss it? No worries — you can catch up on all the latest highlights, updates, and opportunities in the #RareDisease research community.
👉 Read it here: loom.ly/J3TUSKg
#ResearchCollaboration #IRDiRC #ERDERA
⭐ New #IRDiRC publication on Therapeutic Advances in Rare Disease: "From roadmap to a sustainable end-to-end individualized therapy pathway".
Read the full publication🔗 loom.ly/8QkpW_I #RareDisease #ERDERA
⭐ New from #IRDiRC! The Funding Models Toolbox supports patient orgs in navigating rare disease research funding.
📎 Toolbox: loom.ly/P67cbCg
📄 Publication: loom.ly/Q7oHLEk
ℹ️ Task Force info: loom.ly/bj02hvQ
#RareDiseases #PatientAdvocacy #Research
Happy to share the recent #IRDIRC publication on Drug-device combinations (DDCs) for Rare Diseases, where we discuss the challenges and needs to consider access, equity and regulation of DDCs for delivering therapies effectively in patients living with #RareDiseases
📣 #IRDiRC Therapies Scientific Committee (TSC) is seeking 3 new experts in rare disease therapy development!
📩 Apply by sending your CV, biosketch, and letter of motivation to: scientific.secretariat@irdirc.org 📅 Deadline: 6 April 2025
🔗 More details loom.ly/Zyg_GDk
📢Convocatoria de IRDiRC:
Buscan a 3 especialistas en desarrollo de terapias para unirse al IRDiRC Therapies Scientific Committee
📝 Plazo abierto hasta el 6 de abril.
📩 : scientific.secretariat@irdirc.org
#EnfermedadesRaras #irdirc
🔬 This is the end of the RE(ACT) Congress & IRDiRC Conference 2025
The third day also gave us many fantastic discussions; we explored funding models and #Drugrepurposing in #rarediseases.
#RAREvolution #IRDiRC
@erdera.bsky.social
🔬 End of day 2 at the RE(ACT) Congress & IRDiRC Conference 2025
Fabulous discussions Today on exploring advanced therapy medicinal products (ATMPs) and understanding the far-reaching impacts of #rarediseases on society.
#RAREvolution #IRDiRC @erdera.bsky.social
🌍CNAG is at the RE(ACT) Congress & IRDC Conference 2025 in Brussels!
🗣️Our colleague Steve Laurie from the Human Genetics team presented success stories from the Solve-RD project. Excited to share rare disease research with the community!
#REACTCongress #IRDiRC #ERDERA #RareDiseases #CNAG
End of day one, after an inspiring session on “Empowering #data” with great speakers
* Nicole Vasilevsky, US
* Sabine Österle, CH
* Thomas Hellebrand, BE
* Marieke Bak, NL
#RAREvolution
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases
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Illuminating session this morning on “Diagnosing #rarediseases: from NBS to machine learning” with outstanding speakers
#collaborationiskey
#RAREvolution!
@erdera.bsky.social #IRDiRC #REACTCongress2025 #OrphanDiseases
@vyepez.bsky.social
This is a start! 🤘🏼
#RAREvolution!
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases
Tomorrow will start the 8th edition of the RE(ACT) Congress! We are ready, and you? It’s time for #RAREvolution!
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases
👉 Register today and check out the complete program: loom.ly/npx4DUQ
#RAREvolution #REACTCongress2025 #RareDiseases #OrphanDiseases
@erdera.bsky.social #IRDiRC
🌟 Only 9 days remain to register for the RE(ACT) Congress & IRDiRC Conference 2025, the one-of-a-kind international Congress on #RareDiseases research.
✨ Join the #RAREvolution
#REACTCongress2025 #RareDiseases #OrphanDiseases
#IRDiRC #ERDERA @erdera.bsky.social
📅 Register here: loom.ly/FOgBwLw
We are pleased to announce that the RE(ACT) Congress and IRDiRC Conference 2025 have extended the regular registration and abstract submission deadline until the end of January!🎉
👉 Register: loom.ly/FOgBwLw
#RAREvolution #RareDiseases #OrphanDiseases #IRDiRC #ERDERA
@rarediseasesint.bsky.social
