Upcoming event
09
Oct
10
Oct
VASCERN Days 2025: Save the Date!
Join us for this online webinar designed for patients, families, and anyone interested in vascular Ehlers-Danlos syndrome (vEDS). You’ll learn who we are, what we do, and how the work of the VASCERN Medium Sized Arteries Working Group (MSA-WG) supports people living with this rare condition.
Living with vEDS often comes with questions and uncertainty. This session will explain how trusted information, developed by expert teams and patient advocates, can help you feel more confident and better informed.
📅 Date: 13 May 2025
🕔 Time: 17:00 CEST
📍 Location: Online
🎟️ Open to all (registration required)
What the webinar will cover
- What is VASCERN?
A simple introduction to the European Reference Network for Rare Multisystemic Vascular Diseases and what it does. - What is the Medium-Sized Arteries Working Group (MSA-WG)?
Learn who we are, what we do, and how our group of medical professionals and patient representatives work together to improve care for vEDS. - What is the ePAG and the MSA ePAG?
Discover how patients and carers actively shape the work of VASCERN through the European Patient Advocacy Group (ePAG). - Living with vEDS: What can the MSA-WG do for you?
- How we support people living with vEDS and their carers
- Why trusted, clear information matters
- Advocating for patient needs at a European level
The goal of this webinar is simple: to show how the information and resources developed by the MSA-WG can help you better understand and manage life with vEDS.
Who is this webinar for?
- People living with vascular Ehlers-Danlos syndrome (vEDS)
- Families, partners, and caregivers of someone with vEDS
- Patient organisations and advocates
- Anyone looking to learn more about vEDS and European cooperation in care
No prior medical knowledge is needed – the webinar will be easy to follow, with time for questions at the end.
How to join
👉 Register here: https://ec.europa.eu/eusurvey/runner/msa-dissemination-webinar
After registering, you’ll receive a link to join the webinar. The session is free and open to all.