Our HHT Working Group finds bevacizumab benefits the majority of people with severe HHT complications, in real-world data from five European countries. Published in the British Journal of Clinical Pharmacology. Read here: bpspubs.onlinelibrary.wiley.com/doi/10.1002/...

🎉 Dr. Robert Damstra, Chair of our PPL Working Group, has been appointed Officer in the Order of Orange-Nassau, one of the Netherlands' most prestigious civil honours. A well-deserved recognition of his remarkable career in lymphoedema care. Read the full story: vascern.eu/news/robert-...

Have you registered yet? 👀 🚀 ERDERA Clinical Trial Call 2026 launches 1 July 🧬 Supporting multinational early‑phase trials in rare diseases Join our webinar (6 July, 15:00–17:00) for guidance + Q&A with experts. 🔗 Find out more and register at: https://loom.ly/Zey54D0 #ERDERA #RareDiseases

ECRD 2026 took place on 3–4 June and several people connected to the VASCERN community were among those who attended and contributed including one who walked away with a Poster Award for the GEMS-App (www.101gems.be). Wonderful to see so many familiar faces👏 #ECRD2026 #RareDiseases

For parents of children with connective tissue disorders, finding clear information about surgery is hard. Three specialist surgeons will answer your questions on 9 June at 17:30 CEST. 👉 ec.europa.eu/eusurvey/run... #RareDisease #ConnectiveTissueDisorders #VASCERN

Two days in Luxembourg at the ERN Coordinators Meeting. Our coordinator raised key questions on non-EU access to CPMS, expertise on new #diseases, and fairer ERN representation. And we wish Donata Meroni a warm farewell as she retires from DG SANTE in June.

How do you tell someone they have a rare vascular disease? This new video from our #Psychology Working Group has practical tips for clinicians on communicating a rare diagnosis because how you say it matters as much as what you say. 🎬 Watch here: youtu.be/rH7PwLypkOE?... #RareDisease

The call for abstracts is now open for the 'Precision Medicine for Genetically Defined Ehlers-Danlos Syndromes' event. The hybrid event will take place September 3-4, in Ghent, Belgium, and livestreamed globally. The deadline for abstract submissions is Sunday, June 7th: shorturl.at/LFKel

🚀 New ERDERA webinar series launching 28 May 2026! Advancing #RareDiseases Diagnostics will explore the full journey of the Diagnostic Research Workstream, from governance & data to innovation and results. 👉 Find out more and register: https://loom.ly/mH7fD24

Today is REDS4VEDS Day. 🔴 Visibility matters. But for people living with vEDS, visibility without accurate information is not enough. Four facts from our expert Q&A series. Watch here: 🎥 Part 1: youtu.be/lGJs15Clsnc 🎥 Part 2: www.youtube.com/watch?v=YJdf... #REDS4VEDS #vEDS #EDSAwarenessMonth

Doctors once investigated Francesco's family for possible abuse because of his severe bruising. The bruising was actually a symptom of undiagnosed #vEDS. Four hospitalisations in six months. And finally, a diagnosis that changed everything. Read Alessandra's story👉 vascern.eu/network/pati...

Most people have never heard of vascular Ehlers-Danlos syndrome (vEDS). This infographic breaks down the key facts about vEDS including what causes it and what it affects. Looking to learn more about vEDS, start here ➡️ vascern.eu/group/medium...

This week, we are dedicating every post to Vascular Ehlers-Danlos Syndrome. May is #EDSAwarenessMonth and this Friday is #REDS4VEDS Day. We'll be posting every day this week: the science, a patient story, the resources, and the clinicians doing the work. Follow along!

Our Medium-Sized Arteries Diseases Working Group has issued a scientific statement recommending irbesartan added to celiprolol for eligible adult patients, based on the ARCADE trial. Trial did not include children or teenagers. 👉 Full statement: vascern.eu/group/medium...

We're at the XI ESVM Congress in Lausanne this week 🇨🇭 Our Project Manager and Education & Scientific Officer are at the VASCERN stand and this Saturday we join the plenary: "When genes don't tell the whole story" with four leading experts from our network. Come find us at the congress! #ESVM2026

📣 Two online courses are offering direct interaction with specialists in rare disease research. 📅 7 April–15 May: Health Data Ethics & Regulatory Frameworks 📅 27 April–12 June: From Lab to Clinic: Translational Research 🔗 Find out more and register: https://loom.ly/oPGm0FY #ERDERA

Neurology resident Egi Mali has just completed a two months placement at Fondazione IRCCS Istituto Neurologico Carlo Besta in Milan through our Summer School Alumni Programme. Stay tuned to learn about her experience. Find out more about the programme ➡️ vascern.eu/training-and...

🚴 Quel sport pratiquer quand on a une maladie vasculaire rare ? Retrouvez la réponse pour le syndrome de Marfan, les MAV du système nerveux central, le lymphœdème primaire et le syndrome d'Ehlers-Danlos vasculaire. Les réponses en vidéo sont disponibles sur YouTube ➡️ youtube.com/playlist?lis...

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