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

☀️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!

📢 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👉bit.ly/46wzabI #AdminJobs #RareDisease

📢 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 🔗 ern-eye.eu/ern-eye-webina… #RareDiseases #COL4A1

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

🚨 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: bit.ly/40DItCL #CPMS #DigitalHealth #RareDiseases #Telemedicine

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: go.eurordis.org/LSvEPV

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

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

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👉bit.ly/4liqauL #WorldHHTDay #RareDisease #SeeBeyond

🚨 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/runne… #Neurology #RareDiseases #Webinar

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

🧠 #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

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 🔗 bit.ly/4dMtprX #Neurology #Neurotwitter #Stroke

🧠 #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: bit.ly/4dMtprX #Neurology

🗣️“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. ➡️ bit.ly/3HmPMbr

🩸 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!

📢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

🟥 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

We recently hosted a webinar showing how to use these tools for better care for patients. ▶️ Watch the replay: youtu.be/j6XQJIicJCU?t=… Or explore more: vascern.eu/news/reds4veds…

🔴 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 🧵