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.
🌍 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
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
January 29, 2026 at 8:58 AM
🌍 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
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
Did you know that over 70% of rare diseases are genetic?🧬
Understanding our genetic origins is key to developing better treatments💡 Read #ERDERA’s Knowledge Pill on #DNA, genetic mutations, epigenetics, and inheritance—explained clearly and accessibly 🔗 https://loom.ly/HfZkiLw
Understanding our genetic origins is key to developing better treatments💡 Read #ERDERA’s Knowledge Pill on #DNA, genetic mutations, epigenetics, and inheritance—explained clearly and accessibly 🔗 https://loom.ly/HfZkiLw
January 23, 2026 at 9:01 AM
Did you know that over 70% of rare diseases are genetic?🧬
Understanding our genetic origins is key to developing better treatments💡 Read #ERDERA’s Knowledge Pill on #DNA, genetic mutations, epigenetics, and inheritance—explained clearly and accessibly 🔗 https://loom.ly/HfZkiLw
Understanding our genetic origins is key to developing better treatments💡 Read #ERDERA’s Knowledge Pill on #DNA, genetic mutations, epigenetics, and inheritance—explained clearly and accessibly 🔗 https://loom.ly/HfZkiLw
⏳ 20 days left to apply! Pre-proposal deadline for the ERDERA 2026 Joint Transnational Call: 📅 12 Feb 2026 | ⏰ 14:00 CET
Theme: Resolving unsolved cases in rare genetic and non-genetic diseases. 👉 Access the full details and criteria: https://loom.ly/YzdmNGY #ERDERA #RareDiseases #ResearchFunding
Theme: Resolving unsolved cases in rare genetic and non-genetic diseases. 👉 Access the full details and criteria: https://loom.ly/YzdmNGY #ERDERA #RareDiseases #ResearchFunding
January 22, 2026 at 10:08 AM
⏳ 20 days left to apply! Pre-proposal deadline for the ERDERA 2026 Joint Transnational Call: 📅 12 Feb 2026 | ⏰ 14:00 CET
Theme: Resolving unsolved cases in rare genetic and non-genetic diseases. 👉 Access the full details and criteria: https://loom.ly/YzdmNGY #ERDERA #RareDiseases #ResearchFunding
Theme: Resolving unsolved cases in rare genetic and non-genetic diseases. 👉 Access the full details and criteria: https://loom.ly/YzdmNGY #ERDERA #RareDiseases #ResearchFunding
📅 Save the date! #iDR26 will take place on 12–13 May 2026 in Brussels.
Join the leading global event on drug repurposing to explore patient-centred innovation from AI and rare diseases to policy and funding.
Early Bird tickets out now ➡️ https://loom.ly/OLXLDNE
#RareDiseases #ERDERA
Join the leading global event on drug repurposing to explore patient-centred innovation from AI and rare diseases to policy and funding.
Early Bird tickets out now ➡️ https://loom.ly/OLXLDNE
#RareDiseases #ERDERA
January 19, 2026 at 8:03 AM
📅 Save the date! #iDR26 will take place on 12–13 May 2026 in Brussels.
Join the leading global event on drug repurposing to explore patient-centred innovation from AI and rare diseases to policy and funding.
Early Bird tickets out now ➡️ https://loom.ly/OLXLDNE
#RareDiseases #ERDERA
Join the leading global event on drug repurposing to explore patient-centred innovation from AI and rare diseases to policy and funding.
Early Bird tickets out now ➡️ https://loom.ly/OLXLDNE
#RareDiseases #ERDERA
Apply to ERDERA's Networking Support Scheme! 💡Funding for events that connect experts on #RareDiseases & #RareCancer
🌍 Boosts inclusion of underrepresented countries
📅 Apply anytime – second deadline: 7 April 2026
🔗 https://loom.ly/scOFS9w
#ERDERA #ResearchFunding
🌍 Boosts inclusion of underrepresented countries
📅 Apply anytime – second deadline: 7 April 2026
🔗 https://loom.ly/scOFS9w
#ERDERA #ResearchFunding
January 15, 2026 at 8:33 AM
Apply to ERDERA's Networking Support Scheme! 💡Funding for events that connect experts on #RareDiseases & #RareCancer
🌍 Boosts inclusion of underrepresented countries
📅 Apply anytime – second deadline: 7 April 2026
🔗 https://loom.ly/scOFS9w
#ERDERA #ResearchFunding
🌍 Boosts inclusion of underrepresented countries
📅 Apply anytime – second deadline: 7 April 2026
🔗 https://loom.ly/scOFS9w
#ERDERA #ResearchFunding
🌍 Save the date for #ECRD2026, a leading patient-led policy event on rare diseases | 3–4 June | Prague & online
This year’s theme: “Rare Diseases in a changing and competitive Europe: shaping policies to address the unmet needs of people living with rare diseases”
🔗 Info: https://loom.ly/kNumRPA
This year’s theme: “Rare Diseases in a changing and competitive Europe: shaping policies to address the unmet needs of people living with rare diseases”
🔗 Info: https://loom.ly/kNumRPA
January 12, 2026 at 12:15 PM
🌍 Save the date for #ECRD2026, a leading patient-led policy event on rare diseases | 3–4 June | Prague & online
This year’s theme: “Rare Diseases in a changing and competitive Europe: shaping policies to address the unmet needs of people living with rare diseases”
🔗 Info: https://loom.ly/kNumRPA
This year’s theme: “Rare Diseases in a changing and competitive Europe: shaping policies to address the unmet needs of people living with rare diseases”
🔗 Info: https://loom.ly/kNumRPA
🚀 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
January 9, 2026 at 9:08 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
The ERDERA coordination team met in Barcelona to align on our shared mission, strengthen collaboration and streamline action for year two 🚀 This was key to keeping a partnership of 180+ partners and 3,000+ stakeholders well aligned and moving towards its objectives 🌍 #ERDERA
December 17, 2025 at 12:41 PM
The ERDERA coordination team met in Barcelona to align on our shared mission, strengthen collaboration and streamline action for year two 🚀 This was key to keeping a partnership of 180+ partners and 3,000+ stakeholders well aligned and moving towards its objectives 🌍 #ERDERA
Three days in Brussels to help advance the European Declaration on Rare and Complex Diseases 👉 ERDERA Coordinator Daria Julkowska joined the HLM Rare 2025 in Brussels. Read the full recap of this important event 🔗 https://loom.ly/JeB52Fc #RareDiseases #ERDERA #HLMRare
December 11, 2025 at 5:45 PM
Three days in Brussels to help advance the European Declaration on Rare and Complex Diseases 👉 ERDERA Coordinator Daria Julkowska joined the HLM Rare 2025 in Brussels. Read the full recap of this important event 🔗 https://loom.ly/JeB52Fc #RareDiseases #ERDERA #HLMRare
Daria Julkowska joined the High-Level Meeting on a European #RareDisease R&I ecosystem 🧬 EU policymakers, industry, patient advocates & researchers came together to push for real actions that boost innovation across the rare disease community💡 #RareDiseases💙 #ERDERA #EUHealth
December 11, 2025 at 8:51 AM
Daria Julkowska joined the High-Level Meeting on a European #RareDisease R&I ecosystem 🧬 EU policymakers, industry, patient advocates & researchers came together to push for real actions that boost innovation across the rare disease community💡 #RareDiseases💙 #ERDERA #EUHealth
That’s a wrap on the 2nd International CRN Conference for Rare Diseases! 🎉Thank you to all who joined onsite and online — your contributions strengthen collaboration and evidence generation across the rare disease community 🤝 Highlights here: https://loom.ly/XQCqGOg #ERDERA #RareDiseases
December 10, 2025 at 4:07 PM
That’s a wrap on the 2nd International CRN Conference for Rare Diseases! 🎉Thank you to all who joined onsite and online — your contributions strengthen collaboration and evidence generation across the rare disease community 🤝 Highlights here: https://loom.ly/XQCqGOg #ERDERA #RareDiseases
📢 ERDERA’s 2026 Joint Transnational Call is OPEN!
The call “Resolving unsolved cases in rare genetic and non-genetic diseases” supports global research efforts to speed up diagnosis & improve outcomes. 🔗All the info is now available: https://loom.ly/YzdmNGY #ERDERA #RareDisease
The call “Resolving unsolved cases in rare genetic and non-genetic diseases” supports global research efforts to speed up diagnosis & improve outcomes. 🔗All the info is now available: https://loom.ly/YzdmNGY #ERDERA #RareDisease
December 10, 2025 at 9:01 AM
📢 ERDERA’s 2026 Joint Transnational Call is OPEN!
The call “Resolving unsolved cases in rare genetic and non-genetic diseases” supports global research efforts to speed up diagnosis & improve outcomes. 🔗All the info is now available: https://loom.ly/YzdmNGY #ERDERA #RareDisease
The call “Resolving unsolved cases in rare genetic and non-genetic diseases” supports global research efforts to speed up diagnosis & improve outcomes. 🔗All the info is now available: https://loom.ly/YzdmNGY #ERDERA #RareDisease
🚀 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!
December 9, 2025 at 2:41 PM
🚀 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!
📅 Save the date! #ECRD 2026 will take place on 3–4 June in Prague, under the theme “Rare diseases in a changing & competitive Europe: shaping policies to address unmet needs”. ✨ Find out more and register 👉 https://loom.ly/kNumRPA #RareDisease #OprhanDrugs #ECRD #Research #PatientVoice
December 4, 2025 at 8:11 AM
📅 Save the date! #ECRD 2026 will take place on 3–4 June in Prague, under the theme “Rare diseases in a changing & competitive Europe: shaping policies to address unmet needs”. ✨ Find out more and register 👉 https://loom.ly/kNumRPA #RareDisease #OprhanDrugs #ECRD #Research #PatientVoice
🚨 Last week to register for the 2nd International Conference on #CRNs! Global experts, fresh insights, inspiring sessions… don’t miss this standout event! 👉 Check speakers & session themes and register before it closes: https://loom.ly/1fhf8zI #RareDiseases #ClinicalResearch #ERDERA
December 3, 2025 at 8:56 AM
🚨 Last week to register for the 2nd International Conference on #CRNs! Global experts, fresh insights, inspiring sessions… don’t miss this standout event! 👉 Check speakers & session themes and register before it closes: https://loom.ly/1fhf8zI #RareDiseases #ClinicalResearch #ERDERA
ERDERA joined regional leaders in human genetics at the 15th Balkan Congress & 3rd Alpe-Adria Meeting in Bled. 🧬 Key topics: rare disease diagnostics, long-read sequencing, OGM, & AI-supported variant interpretation. Read more 👉 https://loom.ly/v4U19e0 #ERDERA #RareDiseases
December 2, 2025 at 9:38 AM
ERDERA joined regional leaders in human genetics at the 15th Balkan Congress & 3rd Alpe-Adria Meeting in Bled. 🧬 Key topics: rare disease diagnostics, long-read sequencing, OGM, & AI-supported variant interpretation. Read more 👉 https://loom.ly/v4U19e0 #ERDERA #RareDiseases
Coordinator Daria Julkowska presented #ERDERA at the 2025 annual meeting of Enpr-EMA (European network of paediatric research at EMA) 🔬 and highlighted how collaboration with the paediatric research community can be further strengthened 🤝 A very fruitful meeting with exciting opportunities ahead!
November 24, 2025 at 1:34 PM
Coordinator Daria Julkowska presented #ERDERA at the 2025 annual meeting of Enpr-EMA (European network of paediatric research at EMA) 🔬 and highlighted how collaboration with the paediatric research community can be further strengthened 🤝 A very fruitful meeting with exciting opportunities ahead!
📣 Join our webinar on the 2026 Joint Transnational Call!
ERDERA’s new call will focus on solving unsolved rare disease cases through variant validation and advanced technologies.
🔸Info: https://lnkd.in/erMJCeGn
🔸Register to the webinar: https://loom.ly/d45a8o8
#ERDERA
ERDERA’s new call will focus on solving unsolved rare disease cases through variant validation and advanced technologies.
🔸Info: https://lnkd.in/erMJCeGn
🔸Register to the webinar: https://loom.ly/d45a8o8
#ERDERA
November 20, 2025 at 8:01 AM
📣 Join our webinar on the 2026 Joint Transnational Call!
ERDERA’s new call will focus on solving unsolved rare disease cases through variant validation and advanced technologies.
🔸Info: https://lnkd.in/erMJCeGn
🔸Register to the webinar: https://loom.ly/d45a8o8
#ERDERA
ERDERA’s new call will focus on solving unsolved rare disease cases through variant validation and advanced technologies.
🔸Info: https://lnkd.in/erMJCeGn
🔸Register to the webinar: https://loom.ly/d45a8o8
#ERDERA
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