@vascern
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
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
This year's Rare Disease Day theme: "More Than You Can Imagine" with a focus on equity.
Read all six stories: vascern.eu/news/living-...
#RareDiseaseDay
Caroline (Infantile haemangioma): "My advice to doctors is to listen to caregivers who deal with children with special needs on a daily basis."
Francesco's mother (vEDS): "Knowledge is hope and reassurance that things can change and care can improve."
Marta (Primary lymphoedema): "My illness is not a limitation—it's a companion that constantly teaches me to adapt."
Dara (HHT): "People are walking around with these ticking time bombs because they don't know about it."
90% of people with HHT go undiagnosed.
Carmen (Marfan syndrome): "I became not just a mother, but also a nurse, a researcher, and sometimes a warrior."
Elisabeth (CADASIL): "I felt like I was holding a secret about my husband: I knew something about him that he didn't know."
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
