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.
Rare disease research works best when it is connected, inclusive and patient-centred. Discover how #EURORDIS is shaping #ERDERA — from national alignment to advanced therapies.
👉 Read the article: https://loom.ly/BApi_EQ
#RareDiseases #HealthResearch
👉 Read the article: https://loom.ly/BApi_EQ
#RareDiseases #HealthResearch
Joining the Dots: EURORDIS’ role in ERDERA and the reshaping of rare disease research
How EURORDIS' contributions are shaping the partnership's development.
www.eurordis.org
December 19, 2025 at 8:06 AM
Rare disease research works best when it is connected, inclusive and patient-centred. Discover how #EURORDIS is shaping #ERDERA — from national alignment to advanced therapies.
👉 Read the article: https://loom.ly/BApi_EQ
#RareDiseases #HealthResearch
👉 Read the article: https://loom.ly/BApi_EQ
#RareDiseases #HealthResearch
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
Reposted by ERDERA
🚀 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
ERDERA's Joint Transnational Call 2025 results are out 🎉 18 projects have been selected representing ~€29 million in funding for preclinical research on rare disease therapies🔬
👉 Discover the selected projects and how they adress the call's core aims: https://loom.ly/BAShwKw #ERDERA #RareDisease
👉 Discover the selected projects and how they adress the call's core aims: https://loom.ly/BAShwKw #ERDERA #RareDisease
ERDERA announces first Joint Transnational Call 2025 portfolio of preclinical therapy projects for rare diseases - ERDERA
Eighteen international pre clinical therapy projects selected under ERDERA’s first Joint Transnational Call will accelerate treatment options for people living with rare diseases across Europe and beyond
erdera.org
December 16, 2025 at 2:46 PM
ERDERA's Joint Transnational Call 2025 results are out 🎉 18 projects have been selected representing ~€29 million in funding for preclinical research on rare disease therapies🔬
👉 Discover the selected projects and how they adress the call's core aims: https://loom.ly/BAShwKw #ERDERA #RareDisease
👉 Discover the selected projects and how they adress the call's core aims: https://loom.ly/BAShwKw #ERDERA #RareDisease
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!
🚀 Survey re-opened! ERDERA wants your input to shape practical #consultancy support in rare disease research. Where do YOU need help most — ethics/regulation, data readiness, PPIE, IP, innovation...
📝 Survey: https://loom.ly/4PY2_TY 🔄 Share with your networks! #ERDERA
📝 Survey: https://loom.ly/4PY2_TY 🔄 Share with your networks! #ERDERA
December 9, 2025 at 8:47 AM
🚀 Survey re-opened! ERDERA wants your input to shape practical #consultancy support in rare disease research. Where do YOU need help most — ethics/regulation, data readiness, PPIE, IP, innovation...
📝 Survey: https://loom.ly/4PY2_TY 🔄 Share with your networks! #ERDERA
📝 Survey: https://loom.ly/4PY2_TY 🔄 Share with your networks! #ERDERA
📅 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
Final chance to register for the 2nd International Conference on Clinical Research Networks! 📩
Join the global rare disease community this December, in Germany or online. 🌐
Co-organised by ERDERA, RDI and IRDiRC.
✍🏼 Programme & registration: https://loom.ly/1fhf8zI
#RareDiseases #ClinicalResearch
Join the global rare disease community this December, in Germany or online. 🌐
Co-organised by ERDERA, RDI and IRDiRC.
✍🏼 Programme & registration: https://loom.ly/1fhf8zI
#RareDiseases #ClinicalResearch
2nd International Conference on Clinical Research Networks: Connected for impact - ERDERA
ERDERA – the European Rare Diseases Research Alliance – is pleased to announce the upcoming 2nd International Conference on Clinical Research Networks (CRNs) for Rare Diseases, co-organised in collaboration with …
erdera.org
November 25, 2025 at 8:55 AM
Final chance to register for the 2nd International Conference on Clinical Research Networks! 📩
Join the global rare disease community this December, in Germany or online. 🌐
Co-organised by ERDERA, RDI and IRDiRC.
✍🏼 Programme & registration: https://loom.ly/1fhf8zI
#RareDiseases #ClinicalResearch
Join the global rare disease community this December, in Germany or online. 🌐
Co-organised by ERDERA, RDI and IRDiRC.
✍🏼 Programme & registration: https://loom.ly/1fhf8zI
#RareDiseases #ClinicalResearch
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!
💜 100 days left until Rare Disease Day 2026! #ERDERA is proud to stand with partners across Europe to turn visibility into action and ensure lived experience shapes research, care and policy.
👉 Read more: https://loom.ly/ii7_OJg #eurordis
👉 Read more: https://loom.ly/ii7_OJg #eurordis
Unity in action: Rare Disease Day 2026 campaign launches with a renewed focus on equity - ERDERA
A global movement, coordinated by EURORDIS in partnership with 72 national alliances, amplifying representation and accelerate fair access to diagnosis, care and research.
erdera.org
November 20, 2025 at 1:43 PM
💜 100 days left until Rare Disease Day 2026! #ERDERA is proud to stand with partners across Europe to turn visibility into action and ensure lived experience shapes research, care and policy.
👉 Read more: https://loom.ly/ii7_OJg #eurordis
👉 Read more: https://loom.ly/ii7_OJg #eurordis
📣 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
Only 3 weeks to go!🚀 Join the 2nd International Conference on Clinical Research Networks, spotlighting global alignment on rare-disease data, diagnostics and CRNs.
📅 9–10 Dec 2025 (Hybrid)
🗣️ Programme: https://loom.ly/1fhf8zI
👉 Register: https://loom.ly/yceyPYw
#ERDERA
📅 9–10 Dec 2025 (Hybrid)
🗣️ Programme: https://loom.ly/1fhf8zI
👉 Register: https://loom.ly/yceyPYw
#ERDERA
2nd International Conference on Clinical Research Networks: Connected for impact - ERDERA
ERDERA – the European Rare Diseases Research Alliance – is pleased to announce the upcoming 2nd International Conference on Clinical Research Networks (CRNs) for Rare Diseases, co-organised in collaboration with …
erdera.org
November 19, 2025 at 8:15 AM
Only 3 weeks to go!🚀 Join the 2nd International Conference on Clinical Research Networks, spotlighting global alignment on rare-disease data, diagnostics and CRNs.
📅 9–10 Dec 2025 (Hybrid)
🗣️ Programme: https://loom.ly/1fhf8zI
👉 Register: https://loom.ly/yceyPYw
#ERDERA
📅 9–10 Dec 2025 (Hybrid)
🗣️ Programme: https://loom.ly/1fhf8zI
👉 Register: https://loom.ly/yceyPYw
#ERDERA
🌍 Secure your spot! #ERDERA is hosting a two-morning virtual #workshop (20–21 November) focused on strengthening collaboration in rare disease research. 👉 Find out more and register: https://loom.ly/mvCfTg0
#ERDERA
#ERDERA
Networking of underrepresented countries for the enhancement of rare disease research - ERDERA
Presenting new evidence from an ERDERA survey across more than 30 countries and co‑create practical solutions to improve inclusion, networking and capacity development.
erdera.org
November 17, 2025 at 11:01 PM
🌍 Secure your spot! #ERDERA is hosting a two-morning virtual #workshop (20–21 November) focused on strengthening collaboration in rare disease research. 👉 Find out more and register: https://loom.ly/mvCfTg0
#ERDERA
#ERDERA
🚀 Survey re-opened! #ERDERA wants your input to shape practical consultancy support in rare disease research. Where do YOU need help most — ethics/regulation, data readiness, PPIE, IP, innovation...
📝 Let us know! Survey: https://loom.ly/IbXYIfw
🔄 Share with your networks!
📝 Let us know! Survey: https://loom.ly/IbXYIfw
🔄 Share with your networks!
Survey re-opened: help pinpoint where consultancy makes the biggest difference in rare disease research - ERDERA
Community input invited on practical consultancy needs in rare disease research.
erdera.org
November 17, 2025 at 8:21 AM
🚀 Survey re-opened! #ERDERA wants your input to shape practical consultancy support in rare disease research. Where do YOU need help most — ethics/regulation, data readiness, PPIE, IP, innovation...
📝 Let us know! Survey: https://loom.ly/IbXYIfw
🔄 Share with your networks!
📝 Let us know! Survey: https://loom.ly/IbXYIfw
🔄 Share with your networks!
🌍 Join ERDERA’s free two-morning online workshop (20–21 Nov) to explore new evidence, share best practices & co-create practical solutions for more inclusive research. 👉 Find out more and register: https://loom.ly/mvCfTg0 #ERDERA
Networking of underrepresented countries for the enhancement of rare disease research - ERDERA
Presenting new evidence from an ERDERA survey across more than 30 countries and co‑create practical solutions to improve inclusion, networking and capacity development.
erdera.org
November 14, 2025 at 8:57 AM
🌍 Join ERDERA’s free two-morning online workshop (20–21 Nov) to explore new evidence, share best practices & co-create practical solutions for more inclusive research. 👉 Find out more and register: https://loom.ly/mvCfTg0 #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
Round 2 of ERDERA’s Networking Support Scheme is open! Apply for funding to host transnational events that boost collaboration, research uptake and knowledge sharing in #RareDiseases and #RareCancers.
👉 See more: https://loom.ly/scOFS9w
👉 See more: https://loom.ly/scOFS9w
Networking Support Scheme - ERDERA
ERDERA's Networking Support Scheme helps promote knowledge sharing on rare diseases and rare cancers through the funding of events. It also encourages the participation from underrepresented European countries in networks.
erdera.org
November 10, 2025 at 8:01 AM
Round 2 of ERDERA’s Networking Support Scheme is open! Apply for funding to host transnational events that boost collaboration, research uptake and knowledge sharing in #RareDiseases and #RareCancers.
👉 See more: https://loom.ly/scOFS9w
👉 See more: https://loom.ly/scOFS9w
🚀 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!