📢 Join ERDERA’s First Landmark Event in Brussels
📅 March 5–7
📍Brussels
🤝 Co-organised by ERDERA and hosted by the BLACKSWAN Foundation and the International Rare Diseases Research Consortium (IRDiRC), the RE(ACT) Congress & IRDiRC
🔗 Register now to secure your spot
📅 March 5–7
📍Brussels
🤝 Co-organised by ERDERA and hosted by the BLACKSWAN Foundation and the International Rare Diseases Research Consortium (IRDiRC), the RE(ACT) Congress & IRDiRC
🔗 Register now to secure your spot
ERDERA on LinkedIn: #rarevolution #reactcongress2025 #rarediseases #orphandiseases #irdirc…
📢 Important Update We are pleased to announce that the RE(ACT) Congress and IRDiRC Conference 2025 have extended the regular registration and abstract…
buff.ly
January 10, 2025 at 9:58 AM
📢 Join ERDERA’s First Landmark Event in Brussels
📅 March 5–7
📍Brussels
🤝 Co-organised by ERDERA and hosted by the BLACKSWAN Foundation and the International Rare Diseases Research Consortium (IRDiRC), the RE(ACT) Congress & IRDiRC
🔗 Register now to secure your spot
📅 March 5–7
📍Brussels
🤝 Co-organised by ERDERA and hosted by the BLACKSWAN Foundation and the International Rare Diseases Research Consortium (IRDiRC), the RE(ACT) Congress & IRDiRC
🔗 Register now to secure your spot
🧬Imagine a world where genetic data can be shared across borders in just one day? 👉At the RE(ACT) Congress & IRDiRC Conference, Vicente Yepez highlighted the power in pinpointing genetic anomalies where DNA tests fall short. 🔗 Read the full article: erdera.org/news/advanci...
Advancing rare disease diagnosis: Insights from Vicente Yepez at the RE(ACT) Congress and IRDiRC Conference 2025 - ERDERA
The RE(ACT) Congress & IRDiRC Conference 2025, an international platform for knowledge sharing on rare and orphan diseases, has been a catalyst for scientific collaboration and advancement since its i...
erdera.org
March 27, 2025 at 12:14 PM
🧬Imagine a world where genetic data can be shared across borders in just one day? 👉At the RE(ACT) Congress & IRDiRC Conference, Vicente Yepez highlighted the power in pinpointing genetic anomalies where DNA tests fall short. 🔗 Read the full article: erdera.org/news/advanci...
For readers interested in personalized therapeutics such as antisense oligonucleotides for ultra-rare diseases, this review from IRDiRC discusses progress in the field and provides a roadmap to address the challenges in their development
www.nature.com/articles/s41...
rdcu.be/ea4yG
www.nature.com/articles/s41...
rdcu.be/ea4yG
February 24, 2025 at 4:28 PM
For readers interested in personalized therapeutics such as antisense oligonucleotides for ultra-rare diseases, this review from IRDiRC discusses progress in the field and provides a roadmap to address the challenges in their development
www.nature.com/articles/s41...
rdcu.be/ea4yG
www.nature.com/articles/s41...
rdcu.be/ea4yG
We are pleased to announce that the RE(ACT) Congress and IRDiRC Conference 2025 have extended the regular registration and abstract submission deadline until the end of January!🎉
👉 Register: loom.ly/FOgBwLw
#RAREvolution #RareDiseases #OrphanDiseases #IRDiRC #ERDERA
@rarediseasesint.bsky.social
👉 Register: loom.ly/FOgBwLw
#RAREvolution #RareDiseases #OrphanDiseases #IRDiRC #ERDERA
@rarediseasesint.bsky.social
January 8, 2025 at 10:26 AM
We are pleased to announce that the RE(ACT) Congress and IRDiRC Conference 2025 have extended the regular registration and abstract submission deadline until the end of January!🎉
👉 Register: loom.ly/FOgBwLw
#RAREvolution #RareDiseases #OrphanDiseases #IRDiRC #ERDERA
@rarediseasesint.bsky.social
👉 Register: loom.ly/FOgBwLw
#RAREvolution #RareDiseases #OrphanDiseases #IRDiRC #ERDERA
@rarediseasesint.bsky.social
🌟 Only 9 days remain to register for the RE(ACT) Congress & IRDiRC Conference 2025, the one-of-a-kind international Congress on #RareDiseases research.
✨ Join the #RAREvolution
#REACTCongress2025 #RareDiseases #OrphanDiseases
#IRDiRC #ERDERA @erdera.bsky.social
📅 Register here: loom.ly/FOgBwLw
✨ Join the #RAREvolution
#REACTCongress2025 #RareDiseases #OrphanDiseases
#IRDiRC #ERDERA @erdera.bsky.social
📅 Register here: loom.ly/FOgBwLw
January 22, 2025 at 2:44 PM
🌟 Only 9 days remain to register for the RE(ACT) Congress & IRDiRC Conference 2025, the one-of-a-kind international Congress on #RareDiseases research.
✨ Join the #RAREvolution
#REACTCongress2025 #RareDiseases #OrphanDiseases
#IRDiRC #ERDERA @erdera.bsky.social
📅 Register here: loom.ly/FOgBwLw
✨ Join the #RAREvolution
#REACTCongress2025 #RareDiseases #OrphanDiseases
#IRDiRC #ERDERA @erdera.bsky.social
📅 Register here: loom.ly/FOgBwLw
#PacBio is proud to join the International Rare Diseases Research Consortium (IRDiRC)!
We’re joining forces with global stakeholders to advance rare disease research and equitable genomic discovery. Together, we move forward.
Details: bit.ly/4b8PqkW
#WeCareForRare #RareDisease #RareDiseaseMonth
We’re joining forces with global stakeholders to advance rare disease research and equitable genomic discovery. Together, we move forward.
Details: bit.ly/4b8PqkW
#WeCareForRare #RareDisease #RareDiseaseMonth
February 27, 2026 at 4:57 PM
#PacBio is proud to join the International Rare Diseases Research Consortium (IRDiRC)!
We’re joining forces with global stakeholders to advance rare disease research and equitable genomic discovery. Together, we move forward.
Details: bit.ly/4b8PqkW
#WeCareForRare #RareDisease #RareDiseaseMonth
We’re joining forces with global stakeholders to advance rare disease research and equitable genomic discovery. Together, we move forward.
Details: bit.ly/4b8PqkW
#WeCareForRare #RareDisease #RareDiseaseMonth
🌟 Why Attend the RE(ACT) Congress & IRDiRC Conference 2025?
🌍 Shape the future of rare disease research with cutting-edge talks, networking, and a patient-centred focus.
✨ Join the #Rarevolution!
📅 Register by month-end: loom.ly/E9DWIro
@rarevolution.bsky.social
🌍 Shape the future of rare disease research with cutting-edge talks, networking, and a patient-centred focus.
✨ Join the #Rarevolution!
📅 Register by month-end: loom.ly/E9DWIro
@rarevolution.bsky.social
January 21, 2025 at 2:25 PM
🌟 Why Attend the RE(ACT) Congress & IRDiRC Conference 2025?
🌍 Shape the future of rare disease research with cutting-edge talks, networking, and a patient-centred focus.
✨ Join the #Rarevolution!
📅 Register by month-end: loom.ly/E9DWIro
@rarevolution.bsky.social
🌍 Shape the future of rare disease research with cutting-edge talks, networking, and a patient-centred focus.
✨ Join the #Rarevolution!
📅 Register by month-end: loom.ly/E9DWIro
@rarevolution.bsky.social
Bulgaria @ IRDiRC meeting. Sofia, a great city, clash of Thracian, Bulgars, Greek, Roman, Ottoman & Soviet cultures. Science good too🧬🔬🧪🧫🧪🧪💊
March 20, 2026 at 1:28 PM
Bulgaria @ IRDiRC meeting. Sofia, a great city, clash of Thracian, Bulgars, Greek, Roman, Ottoman & Soviet cultures. Science good too🧬🔬🧪🧫🧪🧪💊
Illuminating session this morning on “Diagnosing #rarediseases: from NBS to machine learning” with outstanding speakers
#collaborationiskey
#RAREvolution!
@erdera.bsky.social #IRDiRC #REACTCongress2025 #OrphanDiseases
@vyepez.bsky.social
#collaborationiskey
#RAREvolution!
@erdera.bsky.social #IRDiRC #REACTCongress2025 #OrphanDiseases
@vyepez.bsky.social
March 5, 2025 at 1:40 PM
Illuminating session this morning on “Diagnosing #rarediseases: from NBS to machine learning” with outstanding speakers
#collaborationiskey
#RAREvolution!
@erdera.bsky.social #IRDiRC #REACTCongress2025 #OrphanDiseases
@vyepez.bsky.social
#collaborationiskey
#RAREvolution!
@erdera.bsky.social #IRDiRC #REACTCongress2025 #OrphanDiseases
@vyepez.bsky.social
🔬 This is the end of the RE(ACT) Congress & IRDiRC Conference 2025
The third day also gave us many fantastic discussions; we explored funding models and #Drugrepurposing in #rarediseases.
#RAREvolution #IRDiRC
@erdera.bsky.social
The third day also gave us many fantastic discussions; we explored funding models and #Drugrepurposing in #rarediseases.
#RAREvolution #IRDiRC
@erdera.bsky.social
www.instagram.com
March 7, 2025 at 3:44 PM
🔬 This is the end of the RE(ACT) Congress & IRDiRC Conference 2025
The third day also gave us many fantastic discussions; we explored funding models and #Drugrepurposing in #rarediseases.
#RAREvolution #IRDiRC
@erdera.bsky.social
The third day also gave us many fantastic discussions; we explored funding models and #Drugrepurposing in #rarediseases.
#RAREvolution #IRDiRC
@erdera.bsky.social
⏳ Final Call for Registration!
The RE(ACT) Congress & IRDiRC Conference 2025 is fast approaching! Regular registration and abstract submissions close at the end of this month. 👉 Register now at loom.ly/FOgBwLw and be part of the #RAREvolution! #RareDiseases
The RE(ACT) Congress & IRDiRC Conference 2025 is fast approaching! Regular registration and abstract submissions close at the end of this month. 👉 Register now at loom.ly/FOgBwLw and be part of the #RAREvolution! #RareDiseases
January 29, 2025 at 8:23 AM
⏳ Final Call for Registration!
The RE(ACT) Congress & IRDiRC Conference 2025 is fast approaching! Regular registration and abstract submissions close at the end of this month. 👉 Register now at loom.ly/FOgBwLw and be part of the #RAREvolution! #RareDiseases
The RE(ACT) Congress & IRDiRC Conference 2025 is fast approaching! Regular registration and abstract submissions close at the end of this month. 👉 Register now at loom.ly/FOgBwLw and be part of the #RAREvolution! #RareDiseases
eye.rarediseasesconsortium.com/m2?r=wAXNB4C...
So I'm taking over chair of IRDiRC diagnostic scientific committee. Thanks for confidence in me. Big shoes to fill following in David Adams footsteps
So I'm taking over chair of IRDiRC diagnostic scientific committee. Thanks for confidence in me. Big shoes to fill following in David Adams footsteps
IRDiRC Newsletter January 2025
The International Rare Disease Consortium proudly supports the World Health Assembly (WHA) Resolution on Rare Diseases. This is a crucial step towards addressing global disparities in care, research, ...
eye.rarediseasesconsortium.com
January 8, 2025 at 8:20 PM
eye.rarediseasesconsortium.com/m2?r=wAXNB4C...
So I'm taking over chair of IRDiRC diagnostic scientific committee. Thanks for confidence in me. Big shoes to fill following in David Adams footsteps
So I'm taking over chair of IRDiRC diagnostic scientific committee. Thanks for confidence in me. Big shoes to fill following in David Adams footsteps
📢Convocatoria de IRDiRC:
Buscan a 3 especialistas en desarrollo de terapias para unirse al IRDiRC Therapies Scientific Committee
📝 Plazo abierto hasta el 6 de abril.
📩 : scientific.secretariat@irdirc.org
#EnfermedadesRaras #irdirc
Buscan a 3 especialistas en desarrollo de terapias para unirse al IRDiRC Therapies Scientific Committee
📝 Plazo abierto hasta el 6 de abril.
📩 : scientific.secretariat@irdirc.org
#EnfermedadesRaras #irdirc
March 14, 2025 at 1:04 PM
📢Convocatoria de IRDiRC:
Buscan a 3 especialistas en desarrollo de terapias para unirse al IRDiRC Therapies Scientific Committee
📝 Plazo abierto hasta el 6 de abril.
📩 : scientific.secretariat@irdirc.org
#EnfermedadesRaras #irdirc
Buscan a 3 especialistas en desarrollo de terapias para unirse al IRDiRC Therapies Scientific Committee
📝 Plazo abierto hasta el 6 de abril.
📩 : scientific.secretariat@irdirc.org
#EnfermedadesRaras #irdirc
En el ámbito internacional, colaboramos con el International Rare Diseases Research Consortium (IRDiRC), participamos en el partenariado @erdera.bsky.social y forma parte del proyecto MinE, que estudia los factores genéticos ligados a la ELA.
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⬇️
June 23, 2025 at 6:36 AM
En el ámbito internacional, colaboramos con el International Rare Diseases Research Consortium (IRDiRC), participamos en el partenariado @erdera.bsky.social y forma parte del proyecto MinE, que estudia los factores genéticos ligados a la ELA.
⬇️
⬇️
The state of the art of N-of-1 therapies and the IRDiRC N-of-1 development roadmap www.nature.com/articles/s41...
rdcu.be/d7nI5
This Review in the January issue discusses the concept of N-of-1 therapies and illustrates advances and challenges in the field using case studies
rdcu.be/d7nI5
This Review in the January issue discusses the concept of N-of-1 therapies and illustrates advances and challenges in the field using case studies
January 24, 2025 at 3:28 PM
The state of the art of N-of-1 therapies and the IRDiRC N-of-1 development roadmap www.nature.com/articles/s41...
rdcu.be/d7nI5
This Review in the January issue discusses the concept of N-of-1 therapies and illustrates advances and challenges in the field using case studies
rdcu.be/d7nI5
This Review in the January issue discusses the concept of N-of-1 therapies and illustrates advances and challenges in the field using case studies
🚀 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!
🎤 Vinciane Pirard (Scientific Advocacy & Insights, Global Medical Affairs – Rare Diseases, #Sanofi) presented the #RealiseD IHI project at the #IRDiRC Consortium Assembly this week! Proud to see our partners advancing innovation in #RareDiseases and orphan medicine development 🚀
October 16, 2025 at 3:07 PM
🎤 Vinciane Pirard (Scientific Advocacy & Insights, Global Medical Affairs – Rare Diseases, #Sanofi) presented the #RealiseD IHI project at the #IRDiRC Consortium Assembly this week! Proud to see our partners advancing innovation in #RareDiseases and orphan medicine development 🚀
Paper out in the @worldmusclesociety.org journal NMD about applying rules of the N=1 IRDIRC taskforce to Duchenne. There will be a debate about this at the WMS conference next Wednesday as well (where I will be less nuanced for the sake of debating).
www.sciencedirect.com/science/arti...
www.sciencedirect.com/science/arti...
Applying the international rare disease research consortium (IRDiRC) N-of-1 therapy task force eligibility criteria for individualised therapies use case: Duchenne muscular dystrophy
The nucleic acid therapy field is making progress in rare diseases, with multiple regulatory approved therapeutic modalities. As these therapeutic app…
www.sciencedirect.com
October 2, 2025 at 7:03 AM
Paper out in the @worldmusclesociety.org journal NMD about applying rules of the N=1 IRDIRC taskforce to Duchenne. There will be a debate about this at the WMS conference next Wednesday as well (where I will be less nuanced for the sake of debating).
www.sciencedirect.com/science/arti...
www.sciencedirect.com/science/arti...
🚀 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
This is a start! 🤘🏼
#RAREvolution!
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases
#RAREvolution!
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases
March 5, 2025 at 9:27 AM
This is a start! 🤘🏼
#RAREvolution!
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases
#RAREvolution!
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases
🚀 Join ERDERA’s First Landmark Event! 🌟
Connect with global experts, explore groundbreaking research, and champion a collaborative, patient-centred approach to #RareDiseases🧬
Register now for the RE(ACT) Congress & IRDiRC Conference 👉 loom.ly/npx4DUQ
#RAREvolution
Connect with global experts, explore groundbreaking research, and champion a collaborative, patient-centred approach to #RareDiseases🧬
Register now for the RE(ACT) Congress & IRDiRC Conference 👉 loom.ly/npx4DUQ
#RAREvolution
January 15, 2025 at 1:28 PM
🚀 Join ERDERA’s First Landmark Event! 🌟
Connect with global experts, explore groundbreaking research, and champion a collaborative, patient-centred approach to #RareDiseases🧬
Register now for the RE(ACT) Congress & IRDiRC Conference 👉 loom.ly/npx4DUQ
#RAREvolution
Connect with global experts, explore groundbreaking research, and champion a collaborative, patient-centred approach to #RareDiseases🧬
Register now for the RE(ACT) Congress & IRDiRC Conference 👉 loom.ly/npx4DUQ
#RAREvolution
🔬 End of day 2 at the RE(ACT) Congress & IRDiRC Conference 2025
Fabulous discussions Today on exploring advanced therapy medicinal products (ATMPs) and understanding the far-reaching impacts of #rarediseases on society.
#RAREvolution #IRDiRC @erdera.bsky.social
Fabulous discussions Today on exploring advanced therapy medicinal products (ATMPs) and understanding the far-reaching impacts of #rarediseases on society.
#RAREvolution #IRDiRC @erdera.bsky.social
www.instagram.com
March 6, 2025 at 4:02 PM
🔬 End of day 2 at the RE(ACT) Congress & IRDiRC Conference 2025
Fabulous discussions Today on exploring advanced therapy medicinal products (ATMPs) and understanding the far-reaching impacts of #rarediseases on society.
#RAREvolution #IRDiRC @erdera.bsky.social
Fabulous discussions Today on exploring advanced therapy medicinal products (ATMPs) and understanding the far-reaching impacts of #rarediseases on society.
#RAREvolution #IRDiRC @erdera.bsky.social
📣 #IRDiRC Therapies Scientific Committee (TSC) is seeking 3 new experts in rare disease therapy development!
📩 Apply by sending your CV, biosketch, and letter of motivation to: scientific.secretariat@irdirc.org 📅 Deadline: 6 April 2025
🔗 More details loom.ly/Zyg_GDk
📩 Apply by sending your CV, biosketch, and letter of motivation to: scientific.secretariat@irdirc.org 📅 Deadline: 6 April 2025
🔗 More details loom.ly/Zyg_GDk
March 14, 2025 at 1:58 PM
📣 #IRDiRC Therapies Scientific Committee (TSC) is seeking 3 new experts in rare disease therapy development!
📩 Apply by sending your CV, biosketch, and letter of motivation to: scientific.secretariat@irdirc.org 📅 Deadline: 6 April 2025
🔗 More details loom.ly/Zyg_GDk
📩 Apply by sending your CV, biosketch, and letter of motivation to: scientific.secretariat@irdirc.org 📅 Deadline: 6 April 2025
🔗 More details loom.ly/Zyg_GDk