VASCERN

Gathering the best expertise in Europe to provide accessible cross-border healthcare to patients with rare vascular diseases #ERNeu #RareDiseases

[VASCERN @vascern]

🚀We have expanded to new skies!

Looking for more ways to stay updated on rare vascular diseases? We’re now sharing insights and resources in even more places. Come find us! 👀

#RareDiseases #VASCERN #StayConnected

[VASCERN @vascern]

☀️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 https://t.co/gJS2ZUfVtb

Wishing you a restful and healthy #summerbreak!

[VASCERN @vascern]

📢 We’re #hiring! Join our team as an Administrative Project Officer to manage logistics, admin, finances & EU project coordination for our rare disease network.

Full time | Paris | Start: Sept/Oct 2025
Learn more & apply here👉https://t.co/RjLdneZDJX

#AdminJobs #RareDisease

[VASCERN @vascern]

📢 Tomorrow: Joint #ERN webinar on COL4A1/A2-related disorders hosted by @ERN_EYE, @epiCARE_ERN & VASCERN.

Dr Stéphanie Guey, VASCERN member will present on cerebrovascular features.
📅 17 July
🔗 https://t.co/cgvnkhAZBl

#RareDiseases #COL4A1

[VASCERN @vascern]

Last Friday, our NEUROVASC WG met in Essen 🇩🇪 for their 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

[VASCERN @vascern]

🚨 CPMS 2.0 is now mobile! Healthcare professionals across ERNs can access & manage clinical cases anytime, anywhere.

📲 Download on the App Store & Google Play
👉Learn more: https://t.co/g4O9hGzawq

#CPMS #DigitalHealth #RareDiseases #Telemedicine

[EURORDIS-Rare Diseases Europe @eurordis]

The European Parliament Intergroup on Cancer and Rare Diseases, of which we are a member of the Secretariat, are hosting a public hearing to help shape the path forward for the trilogue negotiations on the General Pharmaceutical Legislation.

📺 Watch: https://t.co/z3ufPHeaBD

[VASCERN @vascern]

What came out of one full day in Brussels? A lot more than discussion.

Our PPL group finalised their clinical outcome measures for adults & children, updated Do’s & Don’ts factsheets, and tackled key care topics.

📝 Resources coming soon!
#Lymphoedema #RareDisease

[VASCERN @vascern]

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: https://t.co/P0eBUjPAi9

[VASCERN @vascern]

Today is World HHT Day🩸

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

Learn more about HHT👉https://t.co/w1SKyDf2aK

#WorldHHTDay #RareDisease #SeeBeyond

[VASCERN @vascern]

🚨 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: https://t.co/Zi4VWqhax2

#Neurology #RareDiseases #Webinar

[VASCERN @vascern]

On June 26, our #Paediatric and Primary #Lymphoedema WG will meet to tackle real challenges in care from compression in infants to transition support and #registries.

Stay tuned as we continue to improve care for both #children & adults with #PrimaryLymphoedema.

#RareDisease

[VASCERN @vascern]

🧠 #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: https://t.co/P0eBUjPAi9

[VASCERN @vascern]

Could it be CADASIL? Unexplained #migraines. Early strokes. Cognitive changes.

Join Prof. Hugues Chabriat on 23 June for a webinar on recognising and managing #CADASIL in clinical practice.
🕔 17:00 CEST 💻 Online
🔗 https://t.co/P0eBUjPAi9

#Neurology #Neurotwitter #Stroke

[VASCERN @vascern]

🧠 #CADASIL can look different in each person, making diagnosis a challenge.

Join Prof. Hugues Chabriat on 23 June at 17:00 CEST for a #webinar on the clinical spectrum of CADASIL.

🎓For clinicians, #neurologists & researchers.

👉Register: https://t.co/P0eBUjQ87H

#Neurology

[VASCERN @vascern]

🧠 #CADASIL can look different in each person, making diagnosis a challenge.

Join Prof. Hugues Chabriat on 23 June at 17:00 CEST for a #webinar on the clinical spectrum of CADASIL.

🎓For clinicians, #neurologists & researchers.

👉Register: https://t.co/P0eBUjQ87H

#Neurology

[VASCERN @vascern]

🗣️“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.
➡️ https://t.co/N8zozLUQHw

[VASCERN @vascern]

🩸 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
🔹 Prep for next BEE Meeting

Thank you to all who participated!

[VASCERN @vascern]

📢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 ➡️ https://t.co/HfXL98lVmj

#RareDiseases #Genetics

[VASCERN @vascern]

🟥 Wear red.
🟥 Share the tools.
🟥 Talk about vEDS.
Let’s make vascular Ehlers-Danlos syndrome visible and make sure fewer people are left undiagnosed.

#Ehlersdanlossyndrome #EDS #vEDS #RareDisease

[VASCERN @vascern]

🔴 Today marks 10 years of #REDS4VEDS, a day to raise awareness for vascular #EhlersDanlos syndrome (vEDS), a rare genetic disorder that’s often diagnosed too late.

Here’s why this matters 🧵

[VASCERN @vascern]

We recently hosted a webinar showing how to use these tools for better care for patients.

▶️ Watch the replay: https://t.co/ihYN8WjA7l

Or explore more: https://t.co/Pr5vQLpkIb