Europe launches a new era in rare disease research! 🚀
With 170+ organisations united under EU leadership, the European Rare Disease Research Alliance (ERDERA) takes over from EJPRD to drive innovation in prevention, diagnosis, and treatment. 🌍💙
Learn more 🌐 erdera.org #ERDERA
With 170+ organisations united under EU leadership, the European Rare Disease Research Alliance (ERDERA) takes over from EJPRD to drive innovation in prevention, diagnosis, and treatment. 🌍💙
Learn more 🌐 erdera.org #ERDERA
January 14, 2025 at 3:54 PM
Europe launches a new era in rare disease research! 🚀
With 170+ organisations united under EU leadership, the European Rare Disease Research Alliance (ERDERA) takes over from EJPRD to drive innovation in prevention, diagnosis, and treatment. 🌍💙
Learn more 🌐 erdera.org #ERDERA
With 170+ organisations united under EU leadership, the European Rare Disease Research Alliance (ERDERA) takes over from EJPRD to drive innovation in prevention, diagnosis, and treatment. 🌍💙
Learn more 🌐 erdera.org #ERDERA
📢 This week marks #RareDiseaseDay — a key moment to raise awareness, advocate for better access to treatment, and improve medical representation for those living with a rare disease.
🗣 Stay tuned as we share insights from diverse voices in the #RareDisease community! 💪 #ERDERA
🗣 Stay tuned as we share insights from diverse voices in the #RareDisease community! 💪 #ERDERA
Rare Disease Day 2025 | Daria Julkowska
YouTube video by ERDERA
www.youtube.com
February 24, 2025 at 12:18 PM
📢 This week marks #RareDiseaseDay — a key moment to raise awareness, advocate for better access to treatment, and improve medical representation for those living with a rare disease.
🗣 Stay tuned as we share insights from diverse voices in the #RareDisease community! 💪 #ERDERA
🗣 Stay tuned as we share insights from diverse voices in the #RareDisease community! 💪 #ERDERA
November 16, 2024 at 9:58 PM
🎯At #ESHG2025, ERDERA showcased its bold vision to transform rare disease diagnostics across Europe—scaling Solve-RD’s success to 100,000+ cases with cutting-edge tech and cross-border collaboration. 🔗 Read more: loom.ly/qv98Csg
#ERDERA
#ERDERA
ERDERA diagnostics research task force showcases impact and ambition at ESHG 2025 - ERDERA
The European Human Genetics Conference 2025 (ESHG) provided a significant platform for the ERDERA Diagnostics Research task force to share its strategic vision, scientific progress, and commitment to ...
loom.ly
June 4, 2025 at 10:01 AM
🎯At #ESHG2025, ERDERA showcased its bold vision to transform rare disease diagnostics across Europe—scaling Solve-RD’s success to 100,000+ cases with cutting-edge tech and cross-border collaboration. 🔗 Read more: loom.ly/qv98Csg
#ERDERA
#ERDERA
#RareDiseaseDay | 🗣 Alexandre Méjat, a rare disease patient, PhD scientist in the field of rare diseases, and @eurordis.bsky.social Director, shares his invaluable insight on the vital role of data collection in achieving quicker diagnoses. 📊⏱ #MoreThanYouCanImagine #RareDiseases #ERDERA
Rare Disease Community | Alexandre Méjat
YouTube video by ERDERA
youtu.be
February 26, 2025 at 8:28 AM
#RareDiseaseDay | 🗣 Alexandre Méjat, a rare disease patient, PhD scientist in the field of rare diseases, and @eurordis.bsky.social Director, shares his invaluable insight on the vital role of data collection in achieving quicker diagnoses. 📊⏱ #MoreThanYouCanImagine #RareDiseases #ERDERA
Can AI really deliver for rare diseases? 🤖 Join ERDERA at #WODCEurope 2026 for the pre-congress workshop "AI for Rare Diseases: From Promise to Practice". A lively debate on where AI can accelerate research and therapy development. 👉 Read more: https://loom.ly/FQvdeRY
#ERDERA #RareDiseases #AI
#ERDERA #RareDiseases #AI
Can AI deliver for rare diseases? ERDERA brings the debate to WODC Europe - ERDERA
ERDERA will return to the World Orphan Drug Congress Europe with a booth and an interactive pre-conference workshop examining where artificial intelligence can support rare disease research and therapeutic development, and where human expertise remains essential.
erdera.org
September 29, 2026 at 7:22 AM
Can AI really deliver for rare diseases? 🤖 Join ERDERA at #WODCEurope 2026 for the pre-congress workshop "AI for Rare Diseases: From Promise to Practice". A lively debate on where AI can accelerate research and therapy development. 👉 Read more: https://loom.ly/FQvdeRY
#ERDERA #RareDiseases #AI
#ERDERA #RareDiseases #AI
💡 New ERDERA Knowledge Pill! What are National Mirror Groups (NMGs) and how do they strengthen collaboration in the rare disease ecosystem?
🔎 Discover their role within the #ERDERA: https://loom.ly/TvHDtK8
#RareDiseases #EUResearch #HealthResearch
🔎 Discover their role within the #ERDERA: https://loom.ly/TvHDtK8
#RareDiseases #EUResearch #HealthResearch
March 17, 2026 at 8:50 AM
💡 New ERDERA Knowledge Pill! What are National Mirror Groups (NMGs) and how do they strengthen collaboration in the rare disease ecosystem?
🔎 Discover their role within the #ERDERA: https://loom.ly/TvHDtK8
#RareDiseases #EUResearch #HealthResearch
🔎 Discover their role within the #ERDERA: https://loom.ly/TvHDtK8
#RareDiseases #EUResearch #HealthResearch
⏳ The deadline is approaching!
Want to expand your knowledge, connect with experts and help drive progress in rare diseases?
Apply for the Open Academy x ERDERA Schools 2027 before 16 October.
📍 Barcelona, 7-10 June 2027
🔗 Apply now: https://loom.ly/uZ0Iz8M
#ERDERA #RareDiseases
Want to expand your knowledge, connect with experts and help drive progress in rare diseases?
Apply for the Open Academy x ERDERA Schools 2027 before 16 October.
📍 Barcelona, 7-10 June 2027
🔗 Apply now: https://loom.ly/uZ0Iz8M
#ERDERA #RareDiseases
September 30, 2026 at 6:16 AM
⏳ The deadline is approaching!
Want to expand your knowledge, connect with experts and help drive progress in rare diseases?
Apply for the Open Academy x ERDERA Schools 2027 before 16 October.
📍 Barcelona, 7-10 June 2027
🔗 Apply now: https://loom.ly/uZ0Iz8M
#ERDERA #RareDiseases
Want to expand your knowledge, connect with experts and help drive progress in rare diseases?
Apply for the Open Academy x ERDERA Schools 2027 before 16 October.
📍 Barcelona, 7-10 June 2027
🔗 Apply now: https://loom.ly/uZ0Iz8M
#ERDERA #RareDiseases
📢 In the week of #RareDiseaseDay, we raise awareness of #RareDisease research and how centres like ours help end the diagnostic odyssey for many patients
🔬 One example is the European project #ERDERA, dedicated to improving rare disease diagnosis
▶️ Press play!
#Genomics #MoreThanYouCanImagine
🔬 One example is the European project #ERDERA, dedicated to improving rare disease diagnosis
▶️ Press play!
#Genomics #MoreThanYouCanImagine
Rare Disease Day 2025 | Daria Julkowska
YouTube video by ERDERA
www.youtube.com
February 26, 2025 at 11:19 AM
📢 In the week of #RareDiseaseDay, we raise awareness of #RareDisease research and how centres like ours help end the diagnostic odyssey for many patients
🔬 One example is the European project #ERDERA, dedicated to improving rare disease diagnosis
▶️ Press play!
#Genomics #MoreThanYouCanImagine
🔬 One example is the European project #ERDERA, dedicated to improving rare disease diagnosis
▶️ Press play!
#Genomics #MoreThanYouCanImagine
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
RDI is proud to support our members to attend the EURORDIS-Rare Diseases Europe ERDERA #OpenAcademy2025! 🎓 through our Strategic Engagement Fellowship Programme.
RDI members are spending the week at this year’s in-person training sessions with the EURORDIS Open Academy in Barcelona.
RDI members are spending the week at this year’s in-person training sessions with the EURORDIS Open Academy in Barcelona.
June 5, 2025 at 9:33 AM
RDI is proud to support our members to attend the EURORDIS-Rare Diseases Europe ERDERA #OpenAcademy2025! 🎓 through our Strategic Engagement Fellowship Programme.
RDI members are spending the week at this year’s in-person training sessions with the EURORDIS Open Academy in Barcelona.
RDI members are spending the week at this year’s in-person training sessions with the EURORDIS Open Academy in Barcelona.
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
Rare disease patients often face years without answers. Thanks to #Solve_RD, 500+ new diagnoses were made by reanalysing data for 6,447 patients. 🚀 Now, ERDERA aims to analyse 100,000 cases with advanced tech! 📖 Read the article: loom.ly/E--1T4s
January 20, 2025 at 1:39 PM
Rare disease patients often face years without answers. Thanks to #Solve_RD, 500+ new diagnoses were made by reanalysing data for 6,447 patients. 🚀 Now, ERDERA aims to analyse 100,000 cases with advanced tech! 📖 Read the article: loom.ly/E--1T4s
Pre-proposal sent to the @erdera.bsky.social 🇪🇺 2025 Joint Transnational Call for #RareDisease Therapies! Long life to the ARTEMIS consortium!
erdera.org/funding/#joi...
erdera.org/funding/#joi...
Funding - ERDERA
erdera.org
February 13, 2025 at 8:30 AM
Pre-proposal sent to the @erdera.bsky.social 🇪🇺 2025 Joint Transnational Call for #RareDisease Therapies! Long life to the ARTEMIS consortium!
erdera.org/funding/#joi...
erdera.org/funding/#joi...
ERDERA Grant Application has been submitted today for NEWCOMS CONNECT project. Congratulations to @fundaciondravet.bsky.social for all the effort done preparing the consortia and making the proposal so exciting for a more healthy society. Big Thanks! #rarediseases #coa #neurosciences #outcomes
April 7, 2026 at 6:03 PM
ERDERA Grant Application has been submitted today for NEWCOMS CONNECT project. Congratulations to @fundaciondravet.bsky.social for all the effort done preparing the consortia and making the proposal so exciting for a more healthy society. Big Thanks! #rarediseases #coa #neurosciences #outcomes
It’s Rare Disease Week!
In the ERDERA project we aim to establish better prevention, diagnosis, and treatment of rare diseases. See our campaign on LinkedIn!
www.linkedin.com/posts/erdera...
In the ERDERA project we aim to establish better prevention, diagnosis, and treatment of rare diseases. See our campaign on LinkedIn!
www.linkedin.com/posts/erdera...
ERDERA on LinkedIn: #rarediseaseday #morethanyoucanimagine #rarediseases #erdera
Rare Disease Day | More than you can imagine 🌟
How can data help patients with undiagnosed rare diseases receive a faster diagnosis? 🤔
Professor Ronald…
www.linkedin.com
February 27, 2025 at 1:16 PM
It’s Rare Disease Week!
In the ERDERA project we aim to establish better prevention, diagnosis, and treatment of rare diseases. See our campaign on LinkedIn!
www.linkedin.com/posts/erdera...
In the ERDERA project we aim to establish better prevention, diagnosis, and treatment of rare diseases. See our campaign on LinkedIn!
www.linkedin.com/posts/erdera...
I’m at the #EURORDIS Open Academy this week in Barcelona- my head and heart are full of the creativity, the potential, the confounding dilemmas, the brilliance of the rare disease world. 🙏 EURORDIS, and ERDERA
Lift-off for the EURORDIS Open Academy x ERDERA Schools' in-person training week, the culmination of a six-month learning journey for our 70+ participants! 🚀
👀 Stay tuned to learn more about what our trainees will be getting up to throughout the week. @erdera.bsky.social
👀 Stay tuned to learn more about what our trainees will be getting up to throughout the week. @erdera.bsky.social
May 26, 2026 at 5:15 PM
I’m at the #EURORDIS Open Academy this week in Barcelona- my head and heart are full of the creativity, the potential, the confounding dilemmas, the brilliance of the rare disease world. 🙏 EURORDIS, and ERDERA
🚀 New video about ERDERA!
Do you know what we are doing in Europe to advance rare disease research?
👀 Take a look at this short video and discover ERDERA, the European-funded initiative that CNAG is proud to be part of
📹 www.youtube.com/watch?v=kK2l...
@erdera.bsky.social #RareDiseases #Europe
Do you know what we are doing in Europe to advance rare disease research?
👀 Take a look at this short video and discover ERDERA, the European-funded initiative that CNAG is proud to be part of
📹 www.youtube.com/watch?v=kK2l...
@erdera.bsky.social #RareDiseases #Europe
Understanding ERDERA: Europe’s alliance for rare disease research
YouTube video by ERDERA
www.youtube.com
June 10, 2026 at 8:47 AM
🚀 New video about ERDERA!
Do you know what we are doing in Europe to advance rare disease research?
👀 Take a look at this short video and discover ERDERA, the European-funded initiative that CNAG is proud to be part of
📹 www.youtube.com/watch?v=kK2l...
@erdera.bsky.social #RareDiseases #Europe
Do you know what we are doing in Europe to advance rare disease research?
👀 Take a look at this short video and discover ERDERA, the European-funded initiative that CNAG is proud to be part of
📹 www.youtube.com/watch?v=kK2l...
@erdera.bsky.social #RareDiseases #Europe
🗣️ Patient organisations: your voice matters!
#ERDERA wants your input on patient engagement in research. 🌍 Your feedback will shape future EU-funded projects. All responses are confidential. 🔗 Take the survey now: loom.ly/JQwZzs8
#ERDERA wants your input on patient engagement in research. 🌍 Your feedback will shape future EU-funded projects. All responses are confidential. 🔗 Take the survey now: loom.ly/JQwZzs8
ERDERA launches survey to put rare-disease patients at the heart of research - ERDERA
ERDERA’s patient-engagement working group has opened an online survey to gauge how rare-disease patient organisations experience their role in publicly funded research, including projects financed und...
loom.ly
May 28, 2025 at 7:26 AM
🗣️ Patient organisations: your voice matters!
#ERDERA wants your input on patient engagement in research. 🌍 Your feedback will shape future EU-funded projects. All responses are confidential. 🔗 Take the survey now: loom.ly/JQwZzs8
#ERDERA wants your input on patient engagement in research. 🌍 Your feedback will shape future EU-funded projects. All responses are confidential. 🔗 Take the survey now: loom.ly/JQwZzs8
🌍 How do National Mirror Groups strengthen rare disease research and policy alignment in Europe?
👉 Watch the video to find out: https://loom.ly/vU0EHzs
#ERDERA #RareDiseases #RareDiseaseResearch
👉 Watch the video to find out: https://loom.ly/vU0EHzs
#ERDERA #RareDiseases #RareDiseaseResearch
How National Mirror Groups strengthen rare disease research and policy alignment in Europe
ERDERA
www.youtube.com
August 31, 2026 at 7:14 AM
🌍 How do National Mirror Groups strengthen rare disease research and policy alignment in Europe?
👉 Watch the video to find out: https://loom.ly/vU0EHzs
#ERDERA #RareDiseases #RareDiseaseResearch
👉 Watch the video to find out: https://loom.ly/vU0EHzs
#ERDERA #RareDiseases #RareDiseaseResearch
💡 New ERDERA Knowledge Pill! What are ATMPs and how are they changing how we think about treatment, especially for people living with rare diseases?
🔎 Learn more: https://loom.ly/pjOwax0
#ATMPs #AdvancedTherapies #RareDiseases #ERDERA
🔎 Learn more: https://loom.ly/pjOwax0
#ATMPs #AdvancedTherapies #RareDiseases #ERDERA
April 9, 2026 at 7:20 AM
💡 New ERDERA Knowledge Pill! What are ATMPs and how are they changing how we think about treatment, especially for people living with rare diseases?
🔎 Learn more: https://loom.ly/pjOwax0
#ATMPs #AdvancedTherapies #RareDiseases #ERDERA
🔎 Learn more: https://loom.ly/pjOwax0
#ATMPs #AdvancedTherapies #RareDiseases #ERDERA
Make your voice heard! 🗣️ #ERDERA has launched a survey to explore how #RareDisease patients can contribute to EU-funded research.
🔐 Confidential & 🤝 Co-created with patients
🔗 Take the survey: shorturl.at/ePVuL (open until mid-July)
📄 Learn more: shorturl.at/c03db
🔐 Confidential & 🤝 Co-created with patients
🔗 Take the survey: shorturl.at/ePVuL (open until mid-July)
📄 Learn more: shorturl.at/c03db
June 12, 2025 at 7:30 AM
Make your voice heard! 🗣️ #ERDERA has launched a survey to explore how #RareDisease patients can contribute to EU-funded research.
🔐 Confidential & 🤝 Co-created with patients
🔗 Take the survey: shorturl.at/ePVuL (open until mid-July)
📄 Learn more: shorturl.at/c03db
🔐 Confidential & 🤝 Co-created with patients
🔗 Take the survey: shorturl.at/ePVuL (open until mid-July)
📄 Learn more: shorturl.at/c03db
📣 #ERDERA is happy to announce a new facilitation period for the MOOC: “Diagnosing Rare Diseases: From the Clinic to Research and Back”! 📅 From 12 May – 4 July, get expert support, ask questions & boost your knowledge in #RareDiseases 🔗 More at loom.ly/88Of0Ps
May 16, 2025 at 10:25 AM
📣 #ERDERA is happy to announce a new facilitation period for the MOOC: “Diagnosing Rare Diseases: From the Clinic to Research and Back”! 📅 From 12 May – 4 July, get expert support, ask questions & boost your knowledge in #RareDiseases 🔗 More at loom.ly/88Of0Ps
🚨 ERDERA Clinical Trial Call now open!
Supporting multinational Phase I–II trials in rare diseases.
🔎 Explore the call: https://loom.ly/climfrw
🎓 Webinar 6 July. Register at https://loom.ly/Zey54D0
🔁 Help spread the word!
#ERDERA #RareDiseases
Supporting multinational Phase I–II trials in rare diseases.
🔎 Explore the call: https://loom.ly/climfrw
🎓 Webinar 6 July. Register at https://loom.ly/Zey54D0
🔁 Help spread the word!
#ERDERA #RareDiseases
July 1, 2026 at 2:45 PM
🚨 ERDERA Clinical Trial Call now open!
Supporting multinational Phase I–II trials in rare diseases.
🔎 Explore the call: https://loom.ly/climfrw
🎓 Webinar 6 July. Register at https://loom.ly/Zey54D0
🔁 Help spread the word!
#ERDERA #RareDiseases
Supporting multinational Phase I–II trials in rare diseases.
🔎 Explore the call: https://loom.ly/climfrw
🎓 Webinar 6 July. Register at https://loom.ly/Zey54D0
🔁 Help spread the word!
#ERDERA #RareDiseases
🚀 First in-person ERDERA National Alignmnet board meeting in Sofia!
#ERDERA brought together representatives from across Europe and beyond, alongside European Commission stakeholders, IRDiRC and other partners to reinforce collective alignment and empower research. 🔗 More: https://loom.ly/K2bkDP8
#ERDERA brought together representatives from across Europe and beyond, alongside European Commission stakeholders, IRDiRC and other partners to reinforce collective alignment and empower research. 🔗 More: https://loom.ly/K2bkDP8
March 19, 2026 at 8:50 AM
🚀 First in-person ERDERA National Alignmnet board meeting in Sofia!
#ERDERA brought together representatives from across Europe and beyond, alongside European Commission stakeholders, IRDiRC and other partners to reinforce collective alignment and empower research. 🔗 More: https://loom.ly/K2bkDP8
#ERDERA brought together representatives from across Europe and beyond, alongside European Commission stakeholders, IRDiRC and other partners to reinforce collective alignment and empower research. 🔗 More: https://loom.ly/K2bkDP8