ERDERA
@erdera.bsky.social
Advancing prevention, diagnosis and treatment research for the 30 million people living with a rare disease in Europe.
🔗 erdera.org
Co-funded by European Union's #HorizonEU Research & Innovation programme. Views expressed are of authors only.
🔗 erdera.org
Co-funded by European Union's #HorizonEU Research & Innovation programme. Views expressed are of authors only.
The countdown is on! ⏰ The International CRN conference is almost here, with speakers from across the globe and an inspiring programme ahead. 🌍 Join us for free, in person or online (registration required).
👉 Secure your spot now: https://loom.ly/yceyPYw
👉 Find out more: https://loom.ly/1fhf8zI
👉 Secure your spot now: https://loom.ly/yceyPYw
👉 Find out more: https://loom.ly/1fhf8zI
November 13, 2025 at 12:25 PM
The countdown is on! ⏰ The International CRN conference is almost here, with speakers from across the globe and an inspiring programme ahead. 🌍 Join us for free, in person or online (registration required).
👉 Secure your spot now: https://loom.ly/yceyPYw
👉 Find out more: https://loom.ly/1fhf8zI
👉 Secure your spot now: https://loom.ly/yceyPYw
👉 Find out more: https://loom.ly/1fhf8zI
🚀 Not long to go for the 2nd International Conference on Clinical Research Networks! 🚀 A key global event on clinical research networks, with great speakers & chairs lined up!
Full programme & registration👉 https://loom.ly/1fhf8zI
🚨 Limited in-person spots available!
Full programme & registration👉 https://loom.ly/1fhf8zI
🚨 Limited in-person spots available!
November 6, 2025 at 7:37 AM
🚀 Not long to go for the 2nd International Conference on Clinical Research Networks! 🚀 A key global event on clinical research networks, with great speakers & chairs lined up!
Full programme & registration👉 https://loom.ly/1fhf8zI
🚨 Limited in-person spots available!
Full programme & registration👉 https://loom.ly/1fhf8zI
🚨 Limited in-person spots available!
📍 ERDERA at the Cohort Innovation Day 2025! Today ERDERA partners Stefanie Haeberle, Marco Roos & Daria Julkowska shared how cohorts & data can drive innovation across Europe at the Imagine Institute in Paris. 💫 #ERDERA #HealthData #ResearchInnovation #RareDiseases
November 5, 2025 at 2:09 PM
📍 ERDERA at the Cohort Innovation Day 2025! Today ERDERA partners Stefanie Haeberle, Marco Roos & Daria Julkowska shared how cohorts & data can drive innovation across Europe at the Imagine Institute in Paris. 💫 #ERDERA #HealthData #ResearchInnovation #RareDiseases
🚀 That’s a wrap on ERDERA’s 2nd General Assembly! Three inspiring days of scientific exchange, strategy & collaboration — advancing research & innovation in the rare disease ecosystem. Huge thanks to Amsterdam UMC for hosting and to all partners for their energy & commitment! 💡 #ERDERA
October 31, 2025 at 3:18 PM
🚀 That’s a wrap on ERDERA’s 2nd General Assembly! Three inspiring days of scientific exchange, strategy & collaboration — advancing research & innovation in the rare disease ecosystem. Huge thanks to Amsterdam UMC for hosting and to all partners for their energy & commitment! 💡 #ERDERA
🚀 The #ERDERA General Assembly has kicked off, marking one year after the launch!
1️⃣ Started with the first in-person meeting of the Multistakeholder Advisory Board
2️⃣ Continued with the open sessions on scientific advances & lived experiences
🔗 More: https://loom.ly/VXpdiqQ
1️⃣ Started with the first in-person meeting of the Multistakeholder Advisory Board
2️⃣ Continued with the open sessions on scientific advances & lived experiences
🔗 More: https://loom.ly/VXpdiqQ
October 30, 2025 at 2:18 PM
🚀 The #ERDERA General Assembly has kicked off, marking one year after the launch!
1️⃣ Started with the first in-person meeting of the Multistakeholder Advisory Board
2️⃣ Continued with the open sessions on scientific advances & lived experiences
🔗 More: https://loom.ly/VXpdiqQ
1️⃣ Started with the first in-person meeting of the Multistakeholder Advisory Board
2️⃣ Continued with the open sessions on scientific advances & lived experiences
🔗 More: https://loom.ly/VXpdiqQ
ERDERA’s Multistakeholder Advisory Board (MAB) met in person for the first time – a key milestone one year after the project’s launch. The MAB provides strategic guidance to ensure ERDERA’s research remains patient-centred. ✨ More details soon! #ERDERA #RareDiseases #HealthResearch
October 29, 2025 at 5:55 PM
ERDERA’s Multistakeholder Advisory Board (MAB) met in person for the first time – a key milestone one year after the project’s launch. The MAB provides strategic guidance to ensure ERDERA’s research remains patient-centred. ✨ More details soon! #ERDERA #RareDiseases #HealthResearch
That’s a wrap on an inspiring #WODC2025! 🌍
The #ERDERA team joined panels, sparked valuable exchanges, and connected with many eager to collaborate and contribute to advancing #RareDisease research in Europe. 💬 Let’s keep the momentum going! 💪 #OrphanDrugs #WODC
The #ERDERA team joined panels, sparked valuable exchanges, and connected with many eager to collaborate and contribute to advancing #RareDisease research in Europe. 💬 Let’s keep the momentum going! 💪 #OrphanDrugs #WODC
October 29, 2025 at 1:46 PM
That’s a wrap on an inspiring #WODC2025! 🌍
The #ERDERA team joined panels, sparked valuable exchanges, and connected with many eager to collaborate and contribute to advancing #RareDisease research in Europe. 💬 Let’s keep the momentum going! 💪 #OrphanDrugs #WODC
The #ERDERA team joined panels, sparked valuable exchanges, and connected with many eager to collaborate and contribute to advancing #RareDisease research in Europe. 💬 Let’s keep the momentum going! 💪 #OrphanDrugs #WODC
Day 2 at #WODC — inspiring exchanges with experts advancing #RareDisease research! 💡 The #ERDERA booth was buzzing, and partners Viviana Giannuzzi, Maurizio Scarpa & Daria Julkowska shared their insights on stage. Recap coming soon! 👀
October 28, 2025 at 7:18 PM
Day 2 at #WODC — inspiring exchanges with experts advancing #RareDisease research! 💡 The #ERDERA booth was buzzing, and partners Viviana Giannuzzi, Maurizio Scarpa & Daria Julkowska shared their insights on stage. Recap coming soon! 👀
Hello #WODC2025 👋
Day 1 kicks off with workshops—and we’re thrilled to be part of it!
🚀 ERDERA, RealiseD & Inventis is leading the biggest session on innovative methodological approaches. Stay tuned for session insights here & on our website!
#RareDiseases #OrphanDrugs #ERDERA
Day 1 kicks off with workshops—and we’re thrilled to be part of it!
🚀 ERDERA, RealiseD & Inventis is leading the biggest session on innovative methodological approaches. Stay tuned for session insights here & on our website!
#RareDiseases #OrphanDrugs #ERDERA
October 27, 2025 at 11:43 AM
Hello #WODC2025 👋
Day 1 kicks off with workshops—and we’re thrilled to be part of it!
🚀 ERDERA, RealiseD & Inventis is leading the biggest session on innovative methodological approaches. Stay tuned for session insights here & on our website!
#RareDiseases #OrphanDrugs #ERDERA
Day 1 kicks off with workshops—and we’re thrilled to be part of it!
🚀 ERDERA, RealiseD & Inventis is leading the biggest session on innovative methodological approaches. Stay tuned for session insights here & on our website!
#RareDiseases #OrphanDrugs #ERDERA
Join the 2nd Int. Conference on Clinical Research Networks for Rare Diseases!
📅 9–10 Dec 2025 🌍 Theme: Mobilising the global rare disease clinical research ecosystem.
Be part of a global effort to strengthen collaboration & innovation.
👉 Register now: https://loom.ly/1fhf8zI
📅 9–10 Dec 2025 🌍 Theme: Mobilising the global rare disease clinical research ecosystem.
Be part of a global effort to strengthen collaboration & innovation.
👉 Register now: https://loom.ly/1fhf8zI
October 24, 2025 at 9:44 AM
Join the 2nd Int. Conference on Clinical Research Networks for Rare Diseases!
📅 9–10 Dec 2025 🌍 Theme: Mobilising the global rare disease clinical research ecosystem.
Be part of a global effort to strengthen collaboration & innovation.
👉 Register now: https://loom.ly/1fhf8zI
📅 9–10 Dec 2025 🌍 Theme: Mobilising the global rare disease clinical research ecosystem.
Be part of a global effort to strengthen collaboration & innovation.
👉 Register now: https://loom.ly/1fhf8zI
🎉 1 week to go! Join the ERDERA Open Session 2025 on 30 Oct — celebrating 1 year of progress in rare disease research and hear from inspiring speakers.🧬
🔗 Register to join: https://loom.ly/j4k2yns
🔗 About the speakers: https://loom.ly/s6JSgbU
#ERDERA #RareDiseases
🔗 Register to join: https://loom.ly/j4k2yns
🔗 About the speakers: https://loom.ly/s6JSgbU
#ERDERA #RareDiseases
October 23, 2025 at 11:10 AM
🎉 1 week to go! Join the ERDERA Open Session 2025 on 30 Oct — celebrating 1 year of progress in rare disease research and hear from inspiring speakers.🧬
🔗 Register to join: https://loom.ly/j4k2yns
🔗 About the speakers: https://loom.ly/s6JSgbU
#ERDERA #RareDiseases
🔗 Register to join: https://loom.ly/j4k2yns
🔗 About the speakers: https://loom.ly/s6JSgbU
#ERDERA #RareDiseases
🚀 The ERDERA 2026 Call for Proposals pre-announcement is live! 🧬 Theme: Resolving unsolved cases in rare genetic and non‑genetic diseases through variant validation and new technological approaches.
📄 Read the pre-announcement: https://loom.ly/YzdmNGY
🔗 More info: https://loom.ly/FOw1yrM
📄 Read the pre-announcement: https://loom.ly/YzdmNGY
🔗 More info: https://loom.ly/FOw1yrM
October 22, 2025 at 7:33 AM
🚀 The ERDERA 2026 Call for Proposals pre-announcement is live! 🧬 Theme: Resolving unsolved cases in rare genetic and non‑genetic diseases through variant validation and new technological approaches.
📄 Read the pre-announcement: https://loom.ly/YzdmNGY
🔗 More info: https://loom.ly/FOw1yrM
📄 Read the pre-announcement: https://loom.ly/YzdmNGY
🔗 More info: https://loom.ly/FOw1yrM
🚀 Just one week to go until the ERDERA Open Session! 🚀
Join us on 30 Oct (9:00–11:20 CET) for an inspiring online event open to the entire rare disease community — and discover ERDERA’s progress after its first year! 🗓️ Free to attend – register now: https://loom.ly/j4k2yns
Join us on 30 Oct (9:00–11:20 CET) for an inspiring online event open to the entire rare disease community — and discover ERDERA’s progress after its first year! 🗓️ Free to attend – register now: https://loom.ly/j4k2yns
October 21, 2025 at 6:16 AM
🚀 Just one week to go until the ERDERA Open Session! 🚀
Join us on 30 Oct (9:00–11:20 CET) for an inspiring online event open to the entire rare disease community — and discover ERDERA’s progress after its first year! 🗓️ Free to attend – register now: https://loom.ly/j4k2yns
Join us on 30 Oct (9:00–11:20 CET) for an inspiring online event open to the entire rare disease community — and discover ERDERA’s progress after its first year! 🗓️ Free to attend – register now: https://loom.ly/j4k2yns
🎉 One week to go for the World Orphan Drug Congress 2025 — a global forum driving innovation and collaboration in #OrphanDrugs and #RareDiseases. 📍 Visit ERDERA at Booth 10.512!
🎟️ Free tickets for patient groups: https://loom.ly/vDD9hwI
More info: https://loom.ly/a5bnWok
🎟️ Free tickets for patient groups: https://loom.ly/vDD9hwI
More info: https://loom.ly/a5bnWok
October 20, 2025 at 7:41 AM
🎉 One week to go for the World Orphan Drug Congress 2025 — a global forum driving innovation and collaboration in #OrphanDrugs and #RareDiseases. 📍 Visit ERDERA at Booth 10.512!
🎟️ Free tickets for patient groups: https://loom.ly/vDD9hwI
More info: https://loom.ly/a5bnWok
🎟️ Free tickets for patient groups: https://loom.ly/vDD9hwI
More info: https://loom.ly/a5bnWok
📸 The start of something exciting! Yesterday was the official launch of the collaboration between ERDERA and #GDI — joining forces to accelerate rare disease research and improve diagnosis across Europe. 🚀 Find out more: https://loom.ly/7lthRbQ
#ERDERA #GDI #RareDiseases #Genomics
#ERDERA #GDI #RareDiseases #Genomics
October 17, 2025 at 10:01 AM
📸 The start of something exciting! Yesterday was the official launch of the collaboration between ERDERA and #GDI — joining forces to accelerate rare disease research and improve diagnosis across Europe. 🚀 Find out more: https://loom.ly/7lthRbQ
#ERDERA #GDI #RareDiseases #Genomics
#ERDERA #GDI #RareDiseases #Genomics
📣 Applications are now open! #EURORDIS Open Academy applications open today for the Medicines R&D and Scientific Innovation Schools.
🎓 80 fully funded spots via #ERDERA
🧪 Hands-on sessions
🤝 Network with advocates & researchers
🔗 https://loom.ly/oK6lwVI #RareDiseases
🎓 80 fully funded spots via #ERDERA
🧪 Hands-on sessions
🤝 Network with advocates & researchers
🔗 https://loom.ly/oK6lwVI #RareDiseases
October 9, 2025 at 10:02 PM
📣 Applications are now open! #EURORDIS Open Academy applications open today for the Medicines R&D and Scientific Innovation Schools.
🎓 80 fully funded spots via #ERDERA
🧪 Hands-on sessions
🤝 Network with advocates & researchers
🔗 https://loom.ly/oK6lwVI #RareDiseases
🎓 80 fully funded spots via #ERDERA
🧪 Hands-on sessions
🤝 Network with advocates & researchers
🔗 https://loom.ly/oK6lwVI #RareDiseases
🎉 ERDERA turns one! Join our free online event on 30 Oct (09:00–11:20 CET) — featuring top experts in neurology, neurometabolic diseases, and patient advocacy. 🔗 Register now & see the speakers: https://loom.ly/ziWSd9o
#RareDiseases #ERDERA #Neurology #PatientAdvocacy
#RareDiseases #ERDERA #Neurology #PatientAdvocacy
October 6, 2025 at 8:43 AM
🎉 ERDERA turns one! Join our free online event on 30 Oct (09:00–11:20 CET) — featuring top experts in neurology, neurometabolic diseases, and patient advocacy. 🔗 Register now & see the speakers: https://loom.ly/ziWSd9o
#RareDiseases #ERDERA #Neurology #PatientAdvocacy
#RareDiseases #ERDERA #Neurology #PatientAdvocacy
🧬 Rare disease research needs action — not just talk.
Join us in Heidelberg (or online) for the 2nd CRN Conference, 9–10 Dec 2025. Free in-person spots still available! 🔗 Find out more: https://loom.ly/NioS23M 🔗 Register: https://loom.ly/1fhf8zI #RareDiseases #CRN2025
Join us in Heidelberg (or online) for the 2nd CRN Conference, 9–10 Dec 2025. Free in-person spots still available! 🔗 Find out more: https://loom.ly/NioS23M 🔗 Register: https://loom.ly/1fhf8zI #RareDiseases #CRN2025
October 1, 2025 at 1:56 PM
🧬 Rare disease research needs action — not just talk.
Join us in Heidelberg (or online) for the 2nd CRN Conference, 9–10 Dec 2025. Free in-person spots still available! 🔗 Find out more: https://loom.ly/NioS23M 🔗 Register: https://loom.ly/1fhf8zI #RareDiseases #CRN2025
Join us in Heidelberg (or online) for the 2nd CRN Conference, 9–10 Dec 2025. Free in-person spots still available! 🔗 Find out more: https://loom.ly/NioS23M 🔗 Register: https://loom.ly/1fhf8zI #RareDiseases #CRN2025
September is Newborn Screening Month! ERDERA launches its first scientific pill on the importance of equitable screening—marking the start of many more to come. 👉 Read the first one here: https://loom.ly/28UA3H8
#RareDiseases #ERDERA #EuropeanCollaboration
#RareDiseases #ERDERA #EuropeanCollaboration
September 25, 2025 at 7:02 AM
September is Newborn Screening Month! ERDERA launches its first scientific pill on the importance of equitable screening—marking the start of many more to come. 👉 Read the first one here: https://loom.ly/28UA3H8
#RareDiseases #ERDERA #EuropeanCollaboration
#RareDiseases #ERDERA #EuropeanCollaboration
🚨 Last chance! The first round of ERDERA’s Networking Support Scheme closes 7 Oct 2025.
A unique opportunity to boost knowledge exchange on #RareDiseases & #RareCancers 🌍.
👉 Apply now & share with your networks: https://loom.ly/scOFS9w #ERDERA #RareDisease #Funding #ResearchFunding
A unique opportunity to boost knowledge exchange on #RareDiseases & #RareCancers 🌍.
👉 Apply now & share with your networks: https://loom.ly/scOFS9w #ERDERA #RareDisease #Funding #ResearchFunding
September 24, 2025 at 7:33 AM
🚨 Last chance! The first round of ERDERA’s Networking Support Scheme closes 7 Oct 2025.
A unique opportunity to boost knowledge exchange on #RareDiseases & #RareCancers 🌍.
👉 Apply now & share with your networks: https://loom.ly/scOFS9w #ERDERA #RareDisease #Funding #ResearchFunding
A unique opportunity to boost knowledge exchange on #RareDiseases & #RareCancers 🌍.
👉 Apply now & share with your networks: https://loom.ly/scOFS9w #ERDERA #RareDisease #Funding #ResearchFunding
⏰ Last chance to register!
The FAIR Training Webinar 2025 starts today (23–25 Sept) with 3 afternoons of expert talks, case studies & interactive sessions on making rare disease data FAIR.
👉 Register before 12:00 CET: https://loom.ly/2LIMvJo
📌 Agenda: https://loom.ly/qOkVzXw
The FAIR Training Webinar 2025 starts today (23–25 Sept) with 3 afternoons of expert talks, case studies & interactive sessions on making rare disease data FAIR.
👉 Register before 12:00 CET: https://loom.ly/2LIMvJo
📌 Agenda: https://loom.ly/qOkVzXw
September 23, 2025 at 7:55 AM
⏰ Last chance to register!
The FAIR Training Webinar 2025 starts today (23–25 Sept) with 3 afternoons of expert talks, case studies & interactive sessions on making rare disease data FAIR.
👉 Register before 12:00 CET: https://loom.ly/2LIMvJo
📌 Agenda: https://loom.ly/qOkVzXw
The FAIR Training Webinar 2025 starts today (23–25 Sept) with 3 afternoons of expert talks, case studies & interactive sessions on making rare disease data FAIR.
👉 Register before 12:00 CET: https://loom.ly/2LIMvJo
📌 Agenda: https://loom.ly/qOkVzXw
ERDERA hosted a 2‑day workshop in Heidelberg to prioritise rare diseases for #ATMP development. Researchers, clinicians & patient advocates co‑designed a framework for earlier, more consistent therapy decisions. 🔗 Read more: https://loom.ly/TpIe68c #ERDERA #RareDiseases
September 18, 2025 at 9:50 AM
ERDERA hosted a 2‑day workshop in Heidelberg to prioritise rare diseases for #ATMP development. Researchers, clinicians & patient advocates co‑designed a framework for earlier, more consistent therapy decisions. 🔗 Read more: https://loom.ly/TpIe68c #ERDERA #RareDiseases
ERDERA's Open Session agenda now public! 🎉 Join our Open Session on 30 Oct for insights from experts in neurology, neurometabolic diseases & patient advocacy.
💡 Free to attend – registration required.
👉 Register: https://loom.ly/j4k2yns
🔎 More details: https://loom.ly/ziWSd9o #ERDERA
💡 Free to attend – registration required.
👉 Register: https://loom.ly/j4k2yns
🔎 More details: https://loom.ly/ziWSd9o #ERDERA
September 16, 2025 at 7:20 AM
ERDERA's Open Session agenda now public! 🎉 Join our Open Session on 30 Oct for insights from experts in neurology, neurometabolic diseases & patient advocacy.
💡 Free to attend – registration required.
👉 Register: https://loom.ly/j4k2yns
🔎 More details: https://loom.ly/ziWSd9o #ERDERA
💡 Free to attend – registration required.
👉 Register: https://loom.ly/j4k2yns
🔎 More details: https://loom.ly/ziWSd9o #ERDERA
📣 Calling for experts from Underrepresented Countries! 🌍
#ERDERA is seeking specialists to join our expert pool! Get involved in activities, panels & networking, plus access funding, training & more.
Interested? 👉 https://loom.ly/YUHruUQ
#ERDERA is seeking specialists to join our expert pool! Get involved in activities, panels & networking, plus access funding, training & more.
Interested? 👉 https://loom.ly/YUHruUQ
September 11, 2025 at 1:15 PM
📣 Calling for experts from Underrepresented Countries! 🌍
#ERDERA is seeking specialists to join our expert pool! Get involved in activities, panels & networking, plus access funding, training & more.
Interested? 👉 https://loom.ly/YUHruUQ
#ERDERA is seeking specialists to join our expert pool! Get involved in activities, panels & networking, plus access funding, training & more.
Interested? 👉 https://loom.ly/YUHruUQ
Are you working to advance research in rare diseases or rare cancers? This is for you! Apply to ERDERA’s Networking Support Scheme by 7 Oct 2025 ⏰ 🔗 Find more information on applying here: https://loom.ly/CwIvcvM
#ERDERA #ResearchFunding
#ERDERA #ResearchFunding
September 10, 2025 at 6:05 AM
Are you working to advance research in rare diseases or rare cancers? This is for you! Apply to ERDERA’s Networking Support Scheme by 7 Oct 2025 ⏰ 🔗 Find more information on applying here: https://loom.ly/CwIvcvM
#ERDERA #ResearchFunding
#ERDERA #ResearchFunding