VASCERN | European Reference Network
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vascern.bsky.social
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
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👥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
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
October 30, 2025 at 3:00 PM
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
October 28, 2025 at 8:56 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
October 23, 2025 at 10:33 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
October 9, 2025 at 8:41 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
October 7, 2025 at 8:01 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.
🏥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
September 26, 2025 at 10:44 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
September 26, 2025 at 10:40 AM
✨ 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...
September 20, 2025 at 1:38 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
September 15, 2025 at 4:20 PM
🙌 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...
September 15, 2025 at 8:39 AM
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 ⬇️
September 3, 2025 at 2:24 PM
☀️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!
August 5, 2025 at 8:34 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
July 14, 2025 at 8:27 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
June 27, 2025 at 7:12 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
June 23, 2025 at 10:51 AM
Today is World HHT Day 🩸

HHT is a rare disease that affects 1 in 5,000 people. It can cause nosebleeds, internal bleeding, and serious health issues if left undiagnosed.

We’ve created simple, helpful tools to download and share: bit.ly/4liqauL

#WorldHHTDay #RareDisease #SeeBeyond
June 23, 2025 at 8:26 AM
🚨 Only 4 days to go! Could that “MS” diagnosis actually be #CADASIL?

Join Prof. Chabriat to explore how MRI clues, progression, & family history can support accurate diagnosis.
🗓️ 23 June | 17:00 CEST
🔗 Register: ec.europa.eu/eusurvey/run...

#Neurology #RareDiseases #Webinar
June 19, 2025 at 12:25 PM
🧠 #CADASIL is the most common genetic small vessel disease, first identified 40+ years ago. Still no treatment. Still under-recognised.

Join Prof. Hugues Chabriat for a webinar on its clinical spectrum.
📅 23 June | 🕔 17:00 CEST
Register here: bit.ly/4dMtprX
#CADASIL #RareDiseases #Stroke #Neurology
June 16, 2025 at 12:07 PM
Reposted by VASCERN | European Reference Network
🔔 Join us on 23 June at 17:00 CEST for the launch of the #Together4RD Toolkit – a key resource to boost ERN-industry collaboration in #RareDisease research.
🔹 Practical tools
🔹 Real-world cases
🔹 Expert speakers
👉 Register: loom.ly/9TZyyX4
#ERDERA
June 16, 2025 at 8:45 AM
🗣️“Even though a cure doesn’t exist, I believe one day HHT will be a disease to remember not one to fear.”

At the recent Based on Evidence #European meeting, experts came together to share evidence-based ways to improve #HHT care across #Europe.

Read more ➡️ bit.ly/3HmPMbr
Key Takeaways From The BEE Meeting 2025 On Hereditary Haemorrhagic Telangiectasia | VASCERN
Explore the key takeaways from the BEE Meeting 2025 on Hereditary Haemorrhagic Telangiectasia, with expert insights and evidence-based updates.
bit.ly
June 4, 2025 at 10:47 AM
🩸 Our HHT Working Group just wrapped up its Spring Meeting!

Key highlights from the day:
🔹 Clinical case discussions
🔹 Do’s & Don’ts for #pregnancy in HHT
🔹 Registry updates
🔹 #Ultrasound course in development
🔹 Preparation for next BEE Meeting

Thank you to all who participated!
May 22, 2025 at 4:36 PM
📢 New resource alert! A gene compendia summarising key genes involved in heritable thoracic aortic diseases like #Marfan & #LoeysDietz syndromes.

For #geneticists, #cardiologists, #researchers & more.
Explore it here ➡️ bit.ly/4kp2YL5

#RareDiseases #Genetics
May 19, 2025 at 12:01 PM
🔴 Today is REDS4VEDS Day 2025, marking 10 years of awareness for vascular Ehlers-Danlos syndrome (vEDS).

Many are still diagnosed only after a medical emergency. We’ve created tools to support vEDS care.

Watch: youtu.be/j6XQJIicJCU?...
More info: bit.ly/4kmcvlV

#REDS4VEDS #vEDS #EDS #RareDisease
May 16, 2025 at 11:52 AM
Up to 75% of people with Moyamoya angiopathy suffer from disabling headaches often without proper diagnosis or care.

Our recent webinar on #headache in Moyamoya shares crucial insights on diagnosis & treatment.

🎥Watch here: bit.ly/3S0tCOo

#Moyamoya #RareDiseases
May 12, 2025 at 2:10 PM
Reposted by VASCERN | European Reference Network
If you are interested in the clinical aspects of lymphatic diseases, don't miss the 30th ISL World Congress of Lymphology. #lymph @vascern.bsky.social
#issva #theralymph
May 9, 2025 at 12:00 PM