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.
🌍 What are national mirror groups & why do they matter in #RareDisease research? Victoria Hedley, Rare Disease Policy Manager at Newcastle Uni, explains their role in supporting collaboration & innovation 🎥 Watch the interview on YouTube to learn more: https://loom.ly/09gqMRM
#RareDiseases #ERDERA
#RareDiseases #ERDERA
February 10, 2026 at 9:01 AM
🌍 What are national mirror groups & why do they matter in #RareDisease research? Victoria Hedley, Rare Disease Policy Manager at Newcastle Uni, explains their role in supporting collaboration & innovation 🎥 Watch the interview on YouTube to learn more: https://loom.ly/09gqMRM
#RareDiseases #ERDERA
#RareDiseases #ERDERA
🌟 The Black Pearl Awards highlight outstanding leadership, collaboration, and innovation across the rare disease community, celebrating those whose work is driving meaningful change in Europe and beyond. 🔗 Join the event in person or online! https://loom.ly/jQKWOfY #EURORDIS #RareDiseases
February 6, 2026 at 1:56 PM
🌟 The Black Pearl Awards highlight outstanding leadership, collaboration, and innovation across the rare disease community, celebrating those whose work is driving meaningful change in Europe and beyond. 🔗 Join the event in person or online! https://loom.ly/jQKWOfY #EURORDIS #RareDiseases
Reposted by ERDERA
📣 Open-access iPSC training | 6 March
EBiSC and ERDERA are joining forces to host a free, open-access training session on best practices for the use and sharing of iPSC lines.
Register here and join us to help strengthen iPSC research!
lnkd.in/extr-ExX
#iPSC #raredisease #stemcell #diseasemodelling
EBiSC and ERDERA are joining forces to host a free, open-access training session on best practices for the use and sharing of iPSC lines.
Register here and join us to help strengthen iPSC research!
lnkd.in/extr-ExX
#iPSC #raredisease #stemcell #diseasemodelling
February 5, 2026 at 10:40 AM
📣 Open-access iPSC training | 6 March
EBiSC and ERDERA are joining forces to host a free, open-access training session on best practices for the use and sharing of iPSC lines.
Register here and join us to help strengthen iPSC research!
lnkd.in/extr-ExX
#iPSC #raredisease #stemcell #diseasemodelling
EBiSC and ERDERA are joining forces to host a free, open-access training session on best practices for the use and sharing of iPSC lines.
Register here and join us to help strengthen iPSC research!
lnkd.in/extr-ExX
#iPSC #raredisease #stemcell #diseasemodelling
The 2nd International CRN Conference highlighted how Clinical Research Networks accelerate research and trials for rare diseases. 🎬 Watch the video for participant insights! https://loom.ly/Y9EVYAQ #RareDiseases #CRNs #ClinicalResearch
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Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.
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February 4, 2026 at 2:14 PM
The 2nd International CRN Conference highlighted how Clinical Research Networks accelerate research and trials for rare diseases. 🎬 Watch the video for participant insights! https://loom.ly/Y9EVYAQ #RareDiseases #CRNs #ClinicalResearch
Advancing the rare brain disease ecosystem 🧠 On 24 Feb 2026 #ERDERA will join a panel discussion on how recent EU policy and regulatory developments can accelerate research, innovation and access for rare brain diseases. 👉 Register to join: https://loom.ly/LsbiQCg
Advancing the Rare Brain Disease Ecosystem – European Brain Council (EBC)
24 February 2026
Rare Disease Day 2026
Advancing the Rare Brain Disease Ecosystem
This event will take place at BlankSpace Place du Luxembourg, Rue d'Arlon 80, 1040, Brussels, Belgium.
www.braincouncil.eu
February 2, 2026 at 1:56 PM
Advancing the rare brain disease ecosystem 🧠 On 24 Feb 2026 #ERDERA will join a panel discussion on how recent EU policy and regulatory developments can accelerate research, innovation and access for rare brain diseases. 👉 Register to join: https://loom.ly/LsbiQCg
🌍 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
💡How is #ERDERA shaping the future of the #RareDisease research ecosystem? Recently, we invited members to reflect on key achievements, the partnership’s significance, and their hopes for the future.
Watch the video https://loom.ly/axqoMwU 👇 #ERDERA #RareDisease #EUHealth
Watch the video https://loom.ly/axqoMwU 👇 #ERDERA #RareDisease #EUHealth
- YouTube
Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.
www.youtube.com
January 27, 2026 at 4:42 PM
💡How is #ERDERA shaping the future of the #RareDisease research ecosystem? Recently, we invited members to reflect on key achievements, the partnership’s significance, and their hopes for the future.
Watch the video https://loom.ly/axqoMwU 👇 #ERDERA #RareDisease #EUHealth
Watch the video https://loom.ly/axqoMwU 👇 #ERDERA #RareDisease #EUHealth
Progress in rare diseases depends on shared knowledge 🔬
As ECRD 2026 partners, ERDERA invites you to submit your abstract and help shape future rare disease care 🤝 🔗 https://loom.ly/pZztyoc #ECRD2026 #EURORDIS #RareDiseases
As ECRD 2026 partners, ERDERA invites you to submit your abstract and help shape future rare disease care 🤝 🔗 https://loom.ly/pZztyoc #ECRD2026 #EURORDIS #RareDiseases
Submit an Abstract for ECRD 2026!
Submit a poster abstract for the 13th European Conference on Rare Diseases and Orphan Products to be in with a chance of winning a free pass to the conference!
www.rare-diseases.eu
January 26, 2026 at 8:13 AM
Progress in rare diseases depends on shared knowledge 🔬
As ECRD 2026 partners, ERDERA invites you to submit your abstract and help shape future rare disease care 🤝 🔗 https://loom.ly/pZztyoc #ECRD2026 #EURORDIS #RareDiseases
As ECRD 2026 partners, ERDERA invites you to submit your abstract and help shape future rare disease care 🤝 🔗 https://loom.ly/pZztyoc #ECRD2026 #EURORDIS #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
🔬 AFM-Telethon has launched its 2026 call for proposals, supporting scientific and medical research in neuromuscular disorders!
📌 Full call documents and info: https://loom.ly/Qrnre_M
🔗 More: https://loom.ly/VM5jLH8
Share within your networks. 🤝🔁
#RareDiseases
📌 Full call documents and info: https://loom.ly/Qrnre_M
🔗 More: https://loom.ly/VM5jLH8
Share within your networks. 🤝🔁
#RareDiseases
AFM Téléthon Calls for proposals
Through its annual calls for proposals, each year AFM-Telethon supports new research projects in France and abroad, particularly for young researchers. After assessment by its Scientific advisory board, the Association finances the most relevant or most innovative initiatives in the development of therapeutic concepts and the understanding of the causes of rare and neuromuscular diseases. Discover its calls for proposals and financing opportunities.
www.afm-telethon.fr
January 8, 2026 at 8:21 AM
🔬 AFM-Telethon has launched its 2026 call for proposals, supporting scientific and medical research in neuromuscular disorders!
📌 Full call documents and info: https://loom.ly/Qrnre_M
🔗 More: https://loom.ly/VM5jLH8
Share within your networks. 🤝🔁
#RareDiseases
📌 Full call documents and info: https://loom.ly/Qrnre_M
🔗 More: https://loom.ly/VM5jLH8
Share within your networks. 🤝🔁
#RareDiseases
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!