VASCERN | European Reference Network
@vascern.bsky.social
Advancing the diagnosis, treatment, and care of patients with rare multisystemic vascular diseases across Europe.
🔬 Evidence-based guidelines | 🌍 Cross-border collaboration | 📚 Education
📌 Visit us: www.vascern.eu
🔬 Evidence-based guidelines | 🌍 Cross-border collaboration | 📚 Education
📌 Visit us: www.vascern.eu
Pinned
👥30M people in Europe live with a #raredisease, yet many face delayed diagnoses and limited treatments.
We’re VASCERN, a European network of experts & patient advocates advancing care for rare multisystemic vascular diseases. Follow us for research updates, resources & more!
👉 www.vascern.eu
We’re VASCERN, a European network of experts & patient advocates advancing care for rare multisystemic vascular diseases. Follow us for research updates, resources & more!
👉 www.vascern.eu
📣 Upcoming free virtual event | Spanish-language
The Marfan Foundation will host its 5th Spanish-Language Summit
📅 Saturday, 24 January 2026
⏰ 16:00–18:30 (CET)
💻 Online
🌍 Sessions are 100% in Spanish
with experts from Europe, Latin America & the US.
Register here: vascern.eu/events/marfa...
The Marfan Foundation will host its 5th Spanish-Language Summit
📅 Saturday, 24 January 2026
⏰ 16:00–18:30 (CET)
💻 Online
🌍 Sessions are 100% in Spanish
with experts from Europe, Latin America & the US.
Register here: vascern.eu/events/marfa...
January 12, 2026 at 12:22 PM
📣 Upcoming free virtual event | Spanish-language
The Marfan Foundation will host its 5th Spanish-Language Summit
📅 Saturday, 24 January 2026
⏰ 16:00–18:30 (CET)
💻 Online
🌍 Sessions are 100% in Spanish
with experts from Europe, Latin America & the US.
Register here: vascern.eu/events/marfa...
The Marfan Foundation will host its 5th Spanish-Language Summit
📅 Saturday, 24 January 2026
⏰ 16:00–18:30 (CET)
💻 Online
🌍 Sessions are 100% in Spanish
with experts from Europe, Latin America & the US.
Register here: vascern.eu/events/marfa...
Reposted by VASCERN | European Reference Network
📢 REMINDER: Join RDI on 15 January 2026 from 13:30 - 14:45 CET (updated time) for a public webinar where we will discuss the current status of the implementation of the WHA Resolution on Rare Diseases, as we approach the WHO EB meeting taking place in February.
📲 Registration Link: lnkd.in/exF6U8z4
📲 Registration Link: lnkd.in/exF6U8z4
January 7, 2026 at 2:33 PM
📢 REMINDER: Join RDI on 15 January 2026 from 13:30 - 14:45 CET (updated time) for a public webinar where we will discuss the current status of the implementation of the WHA Resolution on Rare Diseases, as we approach the WHO EB meeting taking place in February.
📲 Registration Link: lnkd.in/exF6U8z4
📲 Registration Link: lnkd.in/exF6U8z4
Reposted by VASCERN | European Reference Network
Join @erneurogen.bsky.social & ERNs across Europe for a crucial webinar:
🛠️ Medical Device Shortages & Regulatory Constraints
🗓️ Wed 21 Jan @ 18:00 CET
🎙️ With clinicians, regulators & industry experts
🔗 Register: bit.ly/eUROGEN21Jan26
#EUfunded #HealthUnion #RareDisease #ERNs
🛠️ Medical Device Shortages & Regulatory Constraints
🗓️ Wed 21 Jan @ 18:00 CET
🎙️ With clinicians, regulators & industry experts
🔗 Register: bit.ly/eUROGEN21Jan26
#EUfunded #HealthUnion #RareDisease #ERNs
January 8, 2026 at 9:14 AM
Join @erneurogen.bsky.social & ERNs across Europe for a crucial webinar:
🛠️ Medical Device Shortages & Regulatory Constraints
🗓️ Wed 21 Jan @ 18:00 CET
🎙️ With clinicians, regulators & industry experts
🔗 Register: bit.ly/eUROGEN21Jan26
#EUfunded #HealthUnion #RareDisease #ERNs
🛠️ Medical Device Shortages & Regulatory Constraints
🗓️ Wed 21 Jan @ 18:00 CET
🎙️ With clinicians, regulators & industry experts
🔗 Register: bit.ly/eUROGEN21Jan26
#EUfunded #HealthUnion #RareDisease #ERNs
🎉 Happy New Year from all of us at VASCERN!
New year, same focus at VASCERN:
supporting clinicians, patients, and families through shared expertise and trusted resources across Europe.
Thank you for following and engaging with our work. We wish you a healthy and hopeful 2026.
New year, same focus at VASCERN:
supporting clinicians, patients, and families through shared expertise and trusted resources across Europe.
Thank you for following and engaging with our work. We wish you a healthy and hopeful 2026.
January 7, 2026 at 12:35 PM
🎉 Happy New Year from all of us at VASCERN!
New year, same focus at VASCERN:
supporting clinicians, patients, and families through shared expertise and trusted resources across Europe.
Thank you for following and engaging with our work. We wish you a healthy and hopeful 2026.
New year, same focus at VASCERN:
supporting clinicians, patients, and families through shared expertise and trusted resources across Europe.
Thank you for following and engaging with our work. We wish you a healthy and hopeful 2026.
As 2025 comes to a close, a moment to recognise what makes VASCERN’s work possible.
Across Europe, patients & healthcare professionals helped turn expertise into practical resources, shared learning, and cross-border collaboration.
Thank you for being part of this work.
We continue in 2026.
Across Europe, patients & healthcare professionals helped turn expertise into practical resources, shared learning, and cross-border collaboration.
Thank you for being part of this work.
We continue in 2026.
December 19, 2025 at 12:00 PM
As 2025 comes to a close, a moment to recognise what makes VASCERN’s work possible.
Across Europe, patients & healthcare professionals helped turn expertise into practical resources, shared learning, and cross-border collaboration.
Thank you for being part of this work.
We continue in 2026.
Across Europe, patients & healthcare professionals helped turn expertise into practical resources, shared learning, and cross-border collaboration.
Thank you for being part of this work.
We continue in 2026.
Most clinicians see few KHE cases. VASCERN’s new pathways provide structured guidance on diagnosis, treatment, Kasabach-Merritt management, and follow-up to support more consistent care across Europe.
Read more ➡️ vascern.eu/news/kaposif...
Read more ➡️ vascern.eu/news/kaposif...
December 16, 2025 at 12:24 PM
Most clinicians see few KHE cases. VASCERN’s new pathways provide structured guidance on diagnosis, treatment, Kasabach-Merritt management, and follow-up to support more consistent care across Europe.
Read more ➡️ vascern.eu/news/kaposif...
Read more ➡️ vascern.eu/news/kaposif...
The first EU report on the ERNs shows real progress:
📈 160% increase in new patients referred to ERN centres
🌍 1,600+ expert units connected across Europe
💻 2,100+ virtual consults improving access to specialist care
Read more: vascern.eu/news/ern-mon...
#rarediseases
📈 160% increase in new patients referred to ERN centres
🌍 1,600+ expert units connected across Europe
💻 2,100+ virtual consults improving access to specialist care
Read more: vascern.eu/news/ern-mon...
#rarediseases
November 27, 2025 at 12:36 PM
The first EU report on the ERNs shows real progress:
📈 160% increase in new patients referred to ERN centres
🌍 1,600+ expert units connected across Europe
💻 2,100+ virtual consults improving access to specialist care
Read more: vascern.eu/news/ern-mon...
#rarediseases
📈 160% increase in new patients referred to ERN centres
🌍 1,600+ expert units connected across Europe
💻 2,100+ virtual consults improving access to specialist care
Read more: vascern.eu/news/ern-mon...
#rarediseases
🧠 Join our ESO–VASCERN webinar on practical tools and registries supporting care for CADASIL & Moyamoya Angiopathy with Dominique Hervé & Nicola Rifino
📅 11 Dec | 16:00 CET
🔗 Register: us02web.zoom.us/webinar/regi...
#Neurovascular #RareDisease #CADASIL #Moyamoya #MedEd
📅 11 Dec | 16:00 CET
🔗 Register: us02web.zoom.us/webinar/regi...
#Neurovascular #RareDisease #CADASIL #Moyamoya #MedEd
November 26, 2025 at 2:01 PM
🧠 Join our ESO–VASCERN webinar on practical tools and registries supporting care for CADASIL & Moyamoya Angiopathy with Dominique Hervé & Nicola Rifino
📅 11 Dec | 16:00 CET
🔗 Register: us02web.zoom.us/webinar/regi...
#Neurovascular #RareDisease #CADASIL #Moyamoya #MedEd
📅 11 Dec | 16:00 CET
🔗 Register: us02web.zoom.us/webinar/regi...
#Neurovascular #RareDisease #CADASIL #Moyamoya #MedEd
Reposted by VASCERN | European Reference Network
🩺 🥼 How does integrating the #ERNs into National Healthcare Systems support healthcare professionals?
By engaging with ERNs, they can:
💡 Access virtual consultations
🎓 Join continuous training
📊 Contribute to research, guidelines & registries
🤝 Enhance care coordination & collaboration
By engaging with ERNs, they can:
💡 Access virtual consultations
🎓 Join continuous training
📊 Contribute to research, guidelines & registries
🤝 Enhance care coordination & collaboration
November 25, 2025 at 2:02 PM
🩺 🥼 How does integrating the #ERNs into National Healthcare Systems support healthcare professionals?
By engaging with ERNs, they can:
💡 Access virtual consultations
🎓 Join continuous training
📊 Contribute to research, guidelines & registries
🤝 Enhance care coordination & collaboration
By engaging with ERNs, they can:
💡 Access virtual consultations
🎓 Join continuous training
📊 Contribute to research, guidelines & registries
🤝 Enhance care coordination & collaboration
Is a clearer way to understand CADASIL? The new NOTCH3-SVD staging system outlines nine stages based on MRI + clinical features.
Our NEUROVASC group helped turn it into an accessible explainer video.
🎥 Watch more here: youtu.be/T5hgroNM7zo?...
#CADASIL #NOTCH3 #RareDisease
Our NEUROVASC group helped turn it into an accessible explainer video.
🎥 Watch more here: youtu.be/T5hgroNM7zo?...
#CADASIL #NOTCH3 #RareDisease
November 25, 2025 at 11:16 AM
Is a clearer way to understand CADASIL? The new NOTCH3-SVD staging system outlines nine stages based on MRI + clinical features.
Our NEUROVASC group helped turn it into an accessible explainer video.
🎥 Watch more here: youtu.be/T5hgroNM7zo?...
#CADASIL #NOTCH3 #RareDisease
Our NEUROVASC group helped turn it into an accessible explainer video.
🎥 Watch more here: youtu.be/T5hgroNM7zo?...
#CADASIL #NOTCH3 #RareDisease
Not every conversation in care is easy especially when the diagnosis is rare.
This new toolkit, co-created by patients, psychologist and clinicians in VASCERN, offers real tools for better, more human #healthcommunication.
Access the toolkit ➡️ vascern.eu/news/rare-di...
#rarediseases
This new toolkit, co-created by patients, psychologist and clinicians in VASCERN, offers real tools for better, more human #healthcommunication.
Access the toolkit ➡️ vascern.eu/news/rare-di...
#rarediseases
October 30, 2025 at 3:00 PM
Not every conversation in care is easy especially when the diagnosis is rare.
This new toolkit, co-created by patients, psychologist and clinicians in VASCERN, offers real tools for better, more human #healthcommunication.
Access the toolkit ➡️ vascern.eu/news/rare-di...
#rarediseases
This new toolkit, co-created by patients, psychologist and clinicians in VASCERN, offers real tools for better, more human #healthcommunication.
Access the toolkit ➡️ vascern.eu/news/rare-di...
#rarediseases
Missed the deadline? You have another chance to apply!
Applications for the VASCERN Summer School 2026 now close Nov 11.
Apply today → vascern.eu/training-and...
#VASCERNSummerSchool #RareDiseases
Applications for the VASCERN Summer School 2026 now close Nov 11.
Apply today → vascern.eu/training-and...
#VASCERNSummerSchool #RareDiseases
October 28, 2025 at 8:56 AM
Missed the deadline? You have another chance to apply!
Applications for the VASCERN Summer School 2026 now close Nov 11.
Apply today → vascern.eu/training-and...
#VASCERNSummerSchool #RareDiseases
Applications for the VASCERN Summer School 2026 now close Nov 11.
Apply today → vascern.eu/training-and...
#VASCERNSummerSchool #RareDiseases
Textbooks teach theory. Our summer school brings it to life, connecting experts and patients with students eager to learn about rare vascular diseases.
Applications are open until Oct 27 → vascern.eu/training-and...
#VASCERNSummerSchool #RareDiseases #marfan #ehlersdanlos #lymphoedema
Applications are open until Oct 27 → vascern.eu/training-and...
#VASCERNSummerSchool #RareDiseases #marfan #ehlersdanlos #lymphoedema
October 23, 2025 at 10:33 AM
Textbooks teach theory. Our summer school brings it to life, connecting experts and patients with students eager to learn about rare vascular diseases.
Applications are open until Oct 27 → vascern.eu/training-and...
#VASCERNSummerSchool #RareDiseases #marfan #ehlersdanlos #lymphoedema
Applications are open until Oct 27 → vascern.eu/training-and...
#VASCERNSummerSchool #RareDiseases #marfan #ehlersdanlos #lymphoedema
VASCERN Days 2025 kicks off in Paris 🎉
Morning sessions covered coordination, communication, CPMS 2.0, ERASMUS+ training, and new rules and extension.
Now on to the Transversal WG talks on Pregnancy, Registries, and Psychology.
#VASCERNDays2025
Morning sessions covered coordination, communication, CPMS 2.0, ERASMUS+ training, and new rules and extension.
Now on to the Transversal WG talks on Pregnancy, Registries, and Psychology.
#VASCERNDays2025
October 9, 2025 at 8:41 AM
VASCERN Days 2025 kicks off in Paris 🎉
Morning sessions covered coordination, communication, CPMS 2.0, ERASMUS+ training, and new rules and extension.
Now on to the Transversal WG talks on Pregnancy, Registries, and Psychology.
#VASCERNDays2025
Morning sessions covered coordination, communication, CPMS 2.0, ERASMUS+ training, and new rules and extension.
Now on to the Transversal WG talks on Pregnancy, Registries, and Psychology.
#VASCERNDays2025
Big week ahead! Our annual VASCERN Days 2025 kicks off in Paris this Thursday and Friday.
Looking forward to seeing so many of our clinicians, ePAGs, and partners as we keep pushing forward together. 🫶
#VASCERNDays2025 #RareDisease #ERNs #CrossBorderCare
Looking forward to seeing so many of our clinicians, ePAGs, and partners as we keep pushing forward together. 🫶
#VASCERNDays2025 #RareDisease #ERNs #CrossBorderCare
October 7, 2025 at 8:01 AM
Big week ahead! Our annual VASCERN Days 2025 kicks off in Paris this Thursday and Friday.
Looking forward to seeing so many of our clinicians, ePAGs, and partners as we keep pushing forward together. 🫶
#VASCERNDays2025 #RareDisease #ERNs #CrossBorderCare
Looking forward to seeing so many of our clinicians, ePAGs, and partners as we keep pushing forward together. 🫶
#VASCERNDays2025 #RareDisease #ERNs #CrossBorderCare
Yesterday we joined FAVA-Multi at Bichat Hospital to share who we are and raise awareness of rare vascular diseases.
Raising awareness is not limited to rare disease day, it happens all year, especially within the healthcare system where patients are treated.
Raising awareness is not limited to rare disease day, it happens all year, especially within the healthcare system where patients are treated.
🏥Aujourd'hui, FAVA-Multi et @vascern.bsky.social tiennent un stand à @hopitalbichat.bsky.social pour se présenter à travers des activités ludiques autour des maladies vasculaires rares
🤝L'objectif : mieux se faire connaître du personnel hospitalier qui travaille à proximité des équipes des filières
🤝L'objectif : mieux se faire connaître du personnel hospitalier qui travaille à proximité des équipes des filières
September 26, 2025 at 10:44 AM
Yesterday we joined FAVA-Multi at Bichat Hospital to share who we are and raise awareness of rare vascular diseases.
Raising awareness is not limited to rare disease day, it happens all year, especially within the healthcare system where patients are treated.
Raising awareness is not limited to rare disease day, it happens all year, especially within the healthcare system where patients are treated.
The VASCERN Summer School 2025 may be over, but the lessons stay with our participants. For Elis, a medical student from Estonia, the highlight was an interactive CADASIL session that offered real clinical insight.
📢 Applications for the 2026 edition are open until October 27, 2025 👉 bit.ly/42MKOMT
📢 Applications for the 2026 edition are open until October 27, 2025 👉 bit.ly/42MKOMT
September 26, 2025 at 10:40 AM
The VASCERN Summer School 2025 may be over, but the lessons stay with our participants. For Elis, a medical student from Estonia, the highlight was an interactive CADASIL session that offered real clinical insight.
📢 Applications for the 2026 edition are open until October 27, 2025 👉 bit.ly/42MKOMT
📢 Applications for the 2026 edition are open until October 27, 2025 👉 bit.ly/42MKOMT
✨ Last day at the #VASCERN Summer School 2025: no slides, no case discussions — just role plays, reflections, and practice in what matters most for patient care: communication.
📢 Apply now for 2026 👉 vascern.eu/training-and...
📢 Apply now for 2026 👉 vascern.eu/training-and...
September 20, 2025 at 1:38 PM
✨ Last day at the #VASCERN Summer School 2025: no slides, no case discussions — just role plays, reflections, and practice in what matters most for patient care: communication.
📢 Apply now for 2026 👉 vascern.eu/training-and...
📢 Apply now for 2026 👉 vascern.eu/training-and...
Day 1 of the #VASCERN Summer School 2025 wrapped up
🔹 HTAD: genetics, diagnosis, treatment, daily life & patient perspectives
🔹 MSA: Vascular EDS & arterial dissection
Talks, case discussions, coffee breaks and a networking event to come 🌍
#RareDiseases #MedicalEducation
🔹 HTAD: genetics, diagnosis, treatment, daily life & patient perspectives
🔹 MSA: Vascular EDS & arterial dissection
Talks, case discussions, coffee breaks and a networking event to come 🌍
#RareDiseases #MedicalEducation
September 15, 2025 at 4:20 PM
Day 1 of the #VASCERN Summer School 2025 wrapped up
🔹 HTAD: genetics, diagnosis, treatment, daily life & patient perspectives
🔹 MSA: Vascular EDS & arterial dissection
Talks, case discussions, coffee breaks and a networking event to come 🌍
#RareDiseases #MedicalEducation
🔹 HTAD: genetics, diagnosis, treatment, daily life & patient perspectives
🔹 MSA: Vascular EDS & arterial dissection
Talks, case discussions, coffee breaks and a networking event to come 🌍
#RareDiseases #MedicalEducation
🙌 It begins! #VASCERN Summer School 2025 kicks off today in Paris.
From packing goodies to welcoming a new cohort, the week ahead is all about rare vascular diseases, learning, and connection 💡
👉 Applications are now open for the 2026 cohort: vascern.eu/training-and...
From packing goodies to welcoming a new cohort, the week ahead is all about rare vascular diseases, learning, and connection 💡
👉 Applications are now open for the 2026 cohort: vascern.eu/training-and...
September 15, 2025 at 8:39 AM
🙌 It begins! #VASCERN Summer School 2025 kicks off today in Paris.
From packing goodies to welcoming a new cohort, the week ahead is all about rare vascular diseases, learning, and connection 💡
👉 Applications are now open for the 2026 cohort: vascern.eu/training-and...
From packing goodies to welcoming a new cohort, the week ahead is all about rare vascular diseases, learning, and connection 💡
👉 Applications are now open for the 2026 cohort: vascern.eu/training-and...
VASCERN = Europe’s Reference Network for rare vascular diseases
But what does that actually mean?
Here are 5 facts about who we are, why we exist & how we work.
Swipe through the images ⬇️
But what does that actually mean?
Here are 5 facts about who we are, why we exist & how we work.
Swipe through the images ⬇️
September 3, 2025 at 2:24 PM
VASCERN = Europe’s Reference Network for rare vascular diseases
But what does that actually mean?
Here are 5 facts about who we are, why we exist & how we work.
Swipe through the images ⬇️
But what does that actually mean?
Here are 5 facts about who we are, why we exist & how we work.
Swipe through the images ⬇️
☀️We're pressing pause for the summer. We're taking a short break from social media until September with fresh updates, resources, and news from our network.
Take this time to catch up on our resources at vascern.eu/resources/
Wishing you a restful and healthy #summerbreak!
Take this time to catch up on our resources at vascern.eu/resources/
Wishing you a restful and healthy #summerbreak!
August 5, 2025 at 8:34 AM
☀️We're pressing pause for the summer. We're taking a short break from social media until September with fresh updates, resources, and news from our network.
Take this time to catch up on our resources at vascern.eu/resources/
Wishing you a restful and healthy #summerbreak!
Take this time to catch up on our resources at vascern.eu/resources/
Wishing you a restful and healthy #summerbreak!
Last Friday, our Neurovascular Diseases WG met in Essen 🇩🇪 for a collaborative summer meeting!
Key moments:
✅ Moyamoya e-learning module validated 🎉
✅ Scientific session + hands-on workshop
✅ Case discussions
Thanks to our hosts & all attendees!
#RareDiseases #CADASIL #Moyamoya #CrossBorderCare
Key moments:
✅ Moyamoya e-learning module validated 🎉
✅ Scientific session + hands-on workshop
✅ Case discussions
Thanks to our hosts & all attendees!
#RareDiseases #CADASIL #Moyamoya #CrossBorderCare
July 14, 2025 at 8:27 AM
Last Friday, our Neurovascular Diseases WG met in Essen 🇩🇪 for a collaborative summer meeting!
Key moments:
✅ Moyamoya e-learning module validated 🎉
✅ Scientific session + hands-on workshop
✅ Case discussions
Thanks to our hosts & all attendees!
#RareDiseases #CADASIL #Moyamoya #CrossBorderCare
Key moments:
✅ Moyamoya e-learning module validated 🎉
✅ Scientific session + hands-on workshop
✅ Case discussions
Thanks to our hosts & all attendees!
#RareDiseases #CADASIL #Moyamoya #CrossBorderCare
A full day in Brussels led to big progress.
Our PPL group finalised
✔️ Clinical Outcome Measures Document (children & adults)
✔️ Do’s & Don’ts factsheets updated
✔️ Key issues discussed: compression in infants, surgery, transition, and more
📝 New resources coming soon!
#Lymphoedema #RareDisease
Our PPL group finalised
✔️ Clinical Outcome Measures Document (children & adults)
✔️ Do’s & Don’ts factsheets updated
✔️ Key issues discussed: compression in infants, surgery, transition, and more
📝 New resources coming soon!
#Lymphoedema #RareDisease
June 27, 2025 at 7:12 AM
A full day in Brussels led to big progress.
Our PPL group finalised
✔️ Clinical Outcome Measures Document (children & adults)
✔️ Do’s & Don’ts factsheets updated
✔️ Key issues discussed: compression in infants, surgery, transition, and more
📝 New resources coming soon!
#Lymphoedema #RareDisease
Our PPL group finalised
✔️ Clinical Outcome Measures Document (children & adults)
✔️ Do’s & Don’ts factsheets updated
✔️ Key issues discussed: compression in infants, surgery, transition, and more
📝 New resources coming soon!
#Lymphoedema #RareDisease
Happening today at 17:00 CEST!
Join Prof. Hugues Chabriat for a live webinar on #CADASIL — a rare #neurological disease often misdiagnosed. Learn how to spot key clinical signs & improve #diagnosis.
🎯 For #Neurology & stroke HCPs
👉 Register: bit.ly/4dMtprX
Join Prof. Hugues Chabriat for a live webinar on #CADASIL — a rare #neurological disease often misdiagnosed. Learn how to spot key clinical signs & improve #diagnosis.
🎯 For #Neurology & stroke HCPs
👉 Register: bit.ly/4dMtprX
June 23, 2025 at 10:51 AM
Happening today at 17:00 CEST!
Join Prof. Hugues Chabriat for a live webinar on #CADASIL — a rare #neurological disease often misdiagnosed. Learn how to spot key clinical signs & improve #diagnosis.
🎯 For #Neurology & stroke HCPs
👉 Register: bit.ly/4dMtprX
Join Prof. Hugues Chabriat for a live webinar on #CADASIL — a rare #neurological disease often misdiagnosed. Learn how to spot key clinical signs & improve #diagnosis.
🎯 For #Neurology & stroke HCPs
👉 Register: bit.ly/4dMtprX