RAREvolution
@rarevolution.bsky.social
Account for the BLACKSWAN Foundation and RE(ACT) Community #RAREvolution, stand up for research on #rarediseases
blackswanfoundation.ch
http://www.react-congress.org 🦓
blackswanfoundation.ch
http://www.react-congress.org 🦓
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
FINALLY #Switzerland is actively taking steps to address #rarediseases. The #FederalCouncil is tasked with improving conditions for tackling rare diseases and establishing a foundation for the sustainable funding of efforts to collect, process, and share health information. #RAREvolution #ProRaris
Rare diseases legislation
Rare diseases present a major challenge to those affected and to the Swiss health system. On 12 September 2025 the Federal Council put a new federal act out for consultation, which is intended to improve the conditions for the implementation of measures to tackle rare diseases.
www.bag.admin.ch
September 17, 2025 at 9:46 AM
FINALLY #Switzerland is actively taking steps to address #rarediseases. The #FederalCouncil is tasked with improving conditions for tackling rare diseases and establishing a foundation for the sustainable funding of efforts to collect, process, and share health information. #RAREvolution #ProRaris
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
Reposted by RAREvolution
Why support the #Resolution4Rare? Because 58% of people with rare conditions face discrimination - in schools, workplaces and even healthcare settings. The WHA Resolution is a step toward inclusion & change. #MentalHealthAwareness #FaceEqualityWeek
www.rarediseasesinternational.org/wha-resoluti...
www.rarediseasesinternational.org/wha-resoluti...
May 19, 2025 at 7:38 AM
Why support the #Resolution4Rare? Because 58% of people with rare conditions face discrimination - in schools, workplaces and even healthcare settings. The WHA Resolution is a step toward inclusion & change. #MentalHealthAwareness #FaceEqualityWeek
www.rarediseasesinternational.org/wha-resoluti...
www.rarediseasesinternational.org/wha-resoluti...
Reposted by RAREvolution
Why support the #Resolution4Rare? Because rare diseases impact us all—family, friends, neighbors. Yet 300M+ people worldwide lack proper diagnosis, treatment & support.
It's time for equity & action.
Join us—urge leaders to commit to real change!
www.rarediseasesinternational.org/wha-resoluti...
It's time for equity & action.
Join us—urge leaders to commit to real change!
www.rarediseasesinternational.org/wha-resoluti...
April 14, 2025 at 8:47 AM
Why support the #Resolution4Rare? Because rare diseases impact us all—family, friends, neighbors. Yet 300M+ people worldwide lack proper diagnosis, treatment & support.
It's time for equity & action.
Join us—urge leaders to commit to real change!
www.rarediseasesinternational.org/wha-resoluti...
It's time for equity & action.
Join us—urge leaders to commit to real change!
www.rarediseasesinternational.org/wha-resoluti...
It's time to register for the international drug repurposing conference, #iDR25, where medicines are reimagined to unlock the potential of existing drugs for patient benefit!
@eatris.bsky.social @remedi4all.bsky.social
#REMEDi4ALL
remedi4all.org/2025-interna...
@eatris.bsky.social @remedi4all.bsky.social
#REMEDi4ALL
remedi4all.org/2025-interna...
April 10, 2025 at 8:57 AM
It's time to register for the international drug repurposing conference, #iDR25, where medicines are reimagined to unlock the potential of existing drugs for patient benefit!
@eatris.bsky.social @remedi4all.bsky.social
#REMEDi4ALL
remedi4all.org/2025-interna...
@eatris.bsky.social @remedi4all.bsky.social
#REMEDi4ALL
remedi4all.org/2025-interna...
📢 Call to Action – It's time for the #RAREvolution!
#WHA must adopt the resolution "Rare diseases: a global health priority for #equity and #inclusion" calling on @who.int to develop a Global Action Plan on Rare Diseases (#GAPRD).
#Resolution4Rare #GlobalHealth #LeaveNoOneBehind #UHC
#WHA must adopt the resolution "Rare diseases: a global health priority for #equity and #inclusion" calling on @who.int to develop a Global Action Plan on Rare Diseases (#GAPRD).
#Resolution4Rare #GlobalHealth #LeaveNoOneBehind #UHC
World Health Assembly Resolution on Rare Diseases - Rare Diseases International
Universal Health Coverage for Rare Diseases (#UHC4RareDiseases) Campaign Toolkit
www.rarediseasesinternational.org
April 10, 2025 at 7:42 AM
📢 Call to Action – It's time for the #RAREvolution!
#WHA must adopt the resolution "Rare diseases: a global health priority for #equity and #inclusion" calling on @who.int to develop a Global Action Plan on Rare Diseases (#GAPRD).
#Resolution4Rare #GlobalHealth #LeaveNoOneBehind #UHC
#WHA must adopt the resolution "Rare diseases: a global health priority for #equity and #inclusion" calling on @who.int to develop a Global Action Plan on Rare Diseases (#GAPRD).
#Resolution4Rare #GlobalHealth #LeaveNoOneBehind #UHC
World Health Assembly Resolution on Rare Diseases - Rare Diseases International
Universal Health Coverage for Rare Diseases (#UHC4RareDiseases) Campaign Toolkit
www.rarediseasesinternational.org
April 10, 2025 at 7:35 AM
📢 Call to Action – It's time for the #RAREvolution!
#WHA must adopt the resolution "Rare diseases: a global health priority for #equity and #inclusion" calling on @who.int to develop a Global Action Plan on Rare Diseases (#GAPRD).
#Resolution4Rare #GlobalHealth #LeaveNoOneBehind #UHC
#WHA must adopt the resolution "Rare diseases: a global health priority for #equity and #inclusion" calling on @who.int to develop a Global Action Plan on Rare Diseases (#GAPRD).
#Resolution4Rare #GlobalHealth #LeaveNoOneBehind #UHC
🧬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
“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
#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.
🔬 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
🔬 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
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
End of day one, after an inspiring session on “Empowering #data” with great speakers
* Nicole Vasilevsky, US
* Sabine Österle, CH
* Thomas Hellebrand, BE
* Marieke Bak, NL
#RAREvolution
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases
* Nicole Vasilevsky, US
* Sabine Österle, CH
* Thomas Hellebrand, BE
* Marieke Bak, NL
#RAREvolution
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases
March 5, 2025 at 4:33 PM
End of day one, after an inspiring session on “Empowering #data” with great speakers
* Nicole Vasilevsky, US
* Sabine Österle, CH
* Thomas Hellebrand, BE
* Marieke Bak, NL
#RAREvolution
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases
* Nicole Vasilevsky, US
* Sabine Österle, CH
* Thomas Hellebrand, BE
* Marieke Bak, NL
#RAREvolution
@erdera.bsky.social #IRDiRC #REACTCongress2025 #RareDiseases #OrphanDiseases
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 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
March 5, 2025 at 8:44 AM
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
February 28, 2025 at 7:42 PM
#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
Years ago, when we wanted to present the BLACKSWAN Foundation with a brochure, our designer came up with a brilliant idea to represent research on #rarediseases without depicting individuals living with those conditions. He utilized an innovative process called WROP, or Water Random Offset Printing.
February 16, 2025 at 6:25 PM
Years ago, when we wanted to present the BLACKSWAN Foundation with a brochure, our designer came up with a brilliant idea to represent research on #rarediseases without depicting individuals living with those conditions. He utilized an innovative process called WROP, or Water Random Offset Printing.
Reposted by RAREvolution
📢 Breaking News! The Executive Board recommends the WHA Resolution on Rare Diseases for adoption at the 78th WHA in May 2025! 📢 🌟The EB’s landmark decision represents the first critical milestone toward our ultimate goal: securing the adoption of the WHA Resolution on Rare Diseases at the #WHA78
February 10, 2025 at 6:37 PM
📢 Breaking News! The Executive Board recommends the WHA Resolution on Rare Diseases for adoption at the 78th WHA in May 2025! 📢 🌟The EB’s landmark decision represents the first critical milestone toward our ultimate goal: securing the adoption of the WHA Resolution on Rare Diseases at the #WHA78
🚨 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.
#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