Day 2 at RE(ACT) in Brussels dives into #ATMPs and real-world patient impacts! From #mRNA breakthroughs to the societal value of #RareDisease treatments, we’re spotlighting both pioneering science and the voices of those who live with these conditions every day. Stay tuned!
March 6, 2025 at 10:08 AM
🧬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
April 7, 2025 at 6:18 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
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
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
#RareDiseaseDay |💡 How can we accelerate rare disease research?
👉 Professor Rima Nabbout (@ap-hp.bsky.social), co-leader of ERDERA's Expertise Service Hub, shares how they are empowering investigators to speed up research and achieve real impact. 🎥 Watch to learn more!
👉 Professor Rima Nabbout (@ap-hp.bsky.social), co-leader of ERDERA's Expertise Service Hub, shares how they are empowering investigators to speed up research and achieve real impact. 🎥 Watch to learn more!
February 24, 2025 at 3:41 PM
Now, Demian Conrad is showcasing years of WROP variations at the Kunsthaus Bienne / Centre d'art de Bienne.
Our brochure is also there!
#RAREvolution
Our brochure is also there!
#RAREvolution
February 16, 2025 at 6:25 PM
Now, Demian Conrad is showcasing years of WROP variations at the Kunsthaus Bienne / Centre d'art de Bienne.
Our brochure is also there!
#RAREvolution
Our brochure is also there!
#RAREvolution
⏳ 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
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
“The EU supports collaboration because no country alone, and no stakeholder alone, has the answer for such huge unmet needs in #raredisease research”
#RAREvolution
#RAREvolution
🌍 At the #REACT2025 Congress in Brussels, we had the privilege of speaking with Irene Norstedt, @ec.europa.eu, who highlighted how collaboration is key in tackling rare disease research. 🔬 Read her insights here: loom.ly/vC4EPjg
#HorizonEU @rarevolution.bsky.social
#HorizonEU @rarevolution.bsky.social
March 13, 2025 at 10:38 AM
“The EU supports collaboration because no country alone, and no stakeholder alone, has the answer for such huge unmet needs in #raredisease research”
#RAREvolution
#RAREvolution
🌟 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
#rarediseases are not always visible, so #colourUp4RARE ! More #research is needed to develop new diagnostic and treatment options and to ensure reliable care. The BLACKSWAN Foundation, with #ProRaris, was in Bern to show our colours. #RAREvolution #RareDiseaseDay #ShareYourColours
March 6, 2026 at 10:16 AM
#rarediseases are not always visible, so #colourUp4RARE ! More #research is needed to develop new diagnostic and treatment options and to ensure reliable care. The BLACKSWAN Foundation, with #ProRaris, was in Bern to show our colours. #RAREvolution #RareDiseaseDay #ShareYourColours
#RAREvolution! Resolution calling for a Global Action Plan on #RareDiseases
The 131 members of the Coalition in Support of the #WHAResolutiononRareDiseases, published an open letter to the DG of the #WHO, emphasizing the need for a Global Action Plan on Rare Diseases.
Read the full open letter here: www.rarediseasesinternational.org/wp-content/u...
Read the full open letter here: www.rarediseasesinternational.org/wp-content/u...
January 24, 2025 at 2:57 PM
#RAREvolution! Resolution calling for a Global Action Plan on #RareDiseases
It's time for #RAREvolution and Patients and Public Involvement #PPI
Fact. Cant tell you how many doctors (especially in the ER) dont know what half my conditions are. Some are really dangerous & can kill me if not careful. You sometimes get the egotistical doc who hates being educated by the "lowly" patient.
#DisabilityPrideMonth #chronicillness
#rarediseases
#DisabilityPrideMonth #chronicillness
#rarediseases
September 17, 2025 at 9:49 AM
It's time for #RAREvolution and Patients and Public Involvement #PPI
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
🔬 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
And we’re live in 3, 2, 1… Brussels has opened its doors to the 8th RE(ACT) Congress & 6th @IRDiRC Conference, a forward-thinking event designed to bring together researchers, patients, and advocates committed to tackling the unique challenges of #rarediseases.
March 6, 2025 at 10:19 AM
🚀 Registrations are now open for RE(ACT) 2027!
Join researchers, clinicians, patient advocates, policymakers, and innovators in Budapest from 10-12 March 2027 for 3 days of science, collaboration, and ideas that can accelerate progress in rare diseases
Register: loom.ly/_fGiC04
#RAREvolution
Join researchers, clinicians, patient advocates, policymakers, and innovators in Budapest from 10-12 March 2027 for 3 days of science, collaboration, and ideas that can accelerate progress in rare diseases
Register: loom.ly/_fGiC04
#RAREvolution
September 22, 2026 at 12:07 PM
🚀 Registrations are now open for RE(ACT) 2027!
Join researchers, clinicians, patient advocates, policymakers, and innovators in Budapest from 10-12 March 2027 for 3 days of science, collaboration, and ideas that can accelerate progress in rare diseases
Register: loom.ly/_fGiC04
#RAREvolution
Join researchers, clinicians, patient advocates, policymakers, and innovators in Budapest from 10-12 March 2027 for 3 days of science, collaboration, and ideas that can accelerate progress in rare diseases
Register: loom.ly/_fGiC04
#RAREvolution
🚀 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
#RAREvolution It was great to collaborate with @erdera.bsky.social in organizing a unique Rare Disease Research Congress with many stakeholders.
📅 Last week, ERDERA joined the 8th #REACTCongress & 6th IRDiRC Conference. The insights gained—from #DrugRepurposing to advanced #mRNA therapies—will guide its mission of uniting 🔬research, 🏛️regulation, and 🗣️patient voices. @rarevolution.bsky.social
Read more ▶️ loom.ly/5qpxeYQ
Read more ▶️ loom.ly/5qpxeYQ
March 11, 2025 at 9:38 AM
#RAREvolution It was great to collaborate with @erdera.bsky.social in organizing a unique Rare Disease Research Congress with many stakeholders.
🚨 Final Call for Registration!
The RE(ACT) Congress is near! Don’t miss your chance— registration will close at the end of the month.
🔬 This is a vital event for the rare disease research community, offering opportunities to connect, collaborate, and participate in the #RAREvolution.
The RE(ACT) Congress is near! Don’t miss your chance— registration will close at the end of the month.
🔬 This is a vital event for the rare disease research community, offering opportunities to connect, collaborate, and participate in the #RAREvolution.
January 29, 2025 at 8:43 AM
🚨 Final Call for Registration!
The RE(ACT) Congress is near! Don’t miss your chance— registration will close at the end of the month.
🔬 This is a vital event for the rare disease research community, offering opportunities to connect, collaborate, and participate in the #RAREvolution.
The RE(ACT) Congress is near! Don’t miss your chance— registration will close at the end of the month.
🔬 This is a vital event for the rare disease research community, offering opportunities to connect, collaborate, and participate in the #RAREvolution.
Tomorrow will start the 8th edition of the RE(ACT) Congress! We are ready, and you? It’s time for #RAREvolution!
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases
March 4, 2025 at 5:47 PM
Tomorrow will start the 8th edition of the RE(ACT) Congress! We are ready, and you? It’s time for #RAREvolution!
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases
📢 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
We're excited to share that the Chairman of the BLACKSWAN Foundation, Dr. @oliviermenzel.bsky.social will be attending the World Orphan Drug Congress Europe from October 27 to 29, 2025!
#RAREvolution #WODC #WorldOrphanDrugCongress
#RAREvolution #WODC #WorldOrphanDrugCongress
September 12, 2025 at 12:59 PM
We're excited to share that the Chairman of the BLACKSWAN Foundation, Dr. @oliviermenzel.bsky.social will be attending the World Orphan Drug Congress Europe from October 27 to 29, 2025!
#RAREvolution #WODC #WorldOrphanDrugCongress
#RAREvolution #WODC #WorldOrphanDrugCongress
🔬 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
Most #raredisease research is initiated and supported by patients, which drives innovation for common diseases as well. #RAREvolution @swissinfo.bsky.social
Desperate to save their children, parents become unexpected drug developers
As the pharma industry turns away, parents of children with ultra-rare diseases step in to advance drug development.
www.swissinfo.ch
December 19, 2025 at 5:33 PM
Most #raredisease research is initiated and supported by patients, which drives innovation for common diseases as well. #RAREvolution @swissinfo.bsky.social