For years, patients with lymphoedema were told not to exercise. The evidence says otherwise. 5 key takeaways from our recent webinar on physical activity and primary lymphoedema. Watch the full recording: youtu.be/MQxDx1m57ic?...

🦓✨ Over the past weeks, we have shared the stories of people living with a rare disease. 💜 Thank you to everyone who so generously shared their personal stories for #RareDiseaseDay. 🌐 Explore them and share them with your networks 📚 https://jardin-ern.eu/european-reference-networks/patient-stories

⏳ 3 days left! The deadline for ECRD 2026 Poster Abstract Submissions is this Friday, 6 March. Submissions are open to patient groups, academics, healthcare professionals, and all other interested parties. 📩 Submit now → www.rare-diseases.eu/posters/ #ECRD2026 #RareDiseases

It's Rare Disease Day 💜 Six people from our VASCERN community shared their personal stories with rare vascular diseases. A thread 🧵

🏥 À l’occasion de la Journée Internationale des Maladies Rares, FAVA-Multi et Vascern ont tenu un stand à l’hôpital Bichat pour se présenter et proposer des animations ludiques autour des maladies vasculaires rares. Cet événement a permis de gagner en visibilité auprès des équipes de l'hôpital 🤝

Prof Nele Devoogdt has spent over a decade helping lymphoedema patients stay active. She founded the lymphoedema centre at UZ Leuven and she's presenting at our online webinar on 2 March. 📅 17:30 CET | Live Q&A included Register here: ec.europa.eu/eusurvey/run...

Today, we officially launched the VASCERN Summer School 2026! Young clinicians & researchers from across Europe joined the first online session of our ERASMUS+ blended programme on rare multisystemic vascular diseases. Welcome to the 2026 cohort.

Can you exercise with primary lymphoedema? What's safe and what needs caution? VASCERN webinar with 3 experts sharing practical guidance + live Q&A. 📅 2 March | 17:30 CET Register: ec.europa.eu/eusurvey/run... #RareDiseases #Lymphoedema #VASCERN

📣 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...

📢 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

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

🎉 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.

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.

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...

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

🧠 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

🩺 🥼 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

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

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

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

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

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

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

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.

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

✨ 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...

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

🙌 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...

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 ⬇️

☀️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!

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

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

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 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

🚨 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

🧠 #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

🔔 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

🗣️“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

🩸 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!

📢 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

🔴 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

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

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

Too many HHT patients still face delayed #diagnosis & inconsistent care. On 23 May in Crema, Italy, the BEE Meeting brings clinicians, researchers & patients together for a full day of evidence-based talks & cross-border #learning. Register here to join us 👉 bit.ly/432kbCV #RareDiseases

Some rare conditions are difficult to recognise. Vascular Ehlers-Danlos syndrome (vEDS) is one of them. We’ve created a structured care pathway to help healthcare professionals: ✔️ Spot the early signs ✔️ Confirm the diagnosis ✔️ Coordinate long-term care 👇

⏰ Our webinar on headache in #Moyamoya angiopathy is happening today! Headache isn’t simple in Moyamoya. It could be an early warning sign or something we don't fully understand yet. Join us live at 17:00 CEST to learn more. Bring your questions! 👉 bit.ly/43p4FTz

Living with vascular #EhlersDanlos syndrome? Join our webinar to get information on practical tools created by experts & patient representatives. 🗓️ 13 May, 17:00 CEST 👉 Register here: bit.ly/3RRmqDV Live captions in English, French, Spanish, Italian, German, & Dutch available. #vEDS #RareDiseases

Planning for #pregnancy with a vascular anomaly (VA)? You don’t have to navigate it alone. Our new patient-friendly booklet covers everything from #contraception to delivery written for people living with a VA such as AVMs, PROS, venous malformations, and more. 📘 Download here ➡️ bit.ly/4jDwqwB

The rare disease community is gathering in Warsaw for the high-level conference “Towards an EU Action Plan on Rare Diseases”, followed by “Bridging Research & Care for Patients” on April 11. VASCERN is represented by Prof. Jondeau & Julie Hallac. 🎥 bit.ly/3Ed11SA #RareDisease #EUHealth

One man. One genetic test. Two diagnoses considered. Was it Sturge-Weber? Klippel-Trenaunay? #Genetics gave a clearer answer: GNA11 mosaicism. This piece explores how precision genetics is reshaping the way we talk about and treat vascular anomaly syndromes. 🧬 Read here: bit.ly/3XNOTht