Empowering you to live better with vEDS - Unlock the knowledge you need | VASCERN Webinar Replay

Living with vascular Ehlers-Danlos syndrome (vEDS) comes with a lot of uncertainty from delayed diagnosis to feeling isolated or unheard in medical settings.

In this replay of our webinar on 13 May, 2025, you’ll hear from both a medical expert and patient advocates who work together through the VASCERN Medium-Sized Arteries Working Group. They walk through the real-life challenges of living with vEDS — and more importantly, the practical resources that can help.

What you’ll discover:
The most common struggles patients face, and how to handle them
Easy-to-use tools like the Do’s & Don’ts, Patient Pathway, emergency card, and Pills of Knowledge
How to share these tools with your doctor and care team
New resources coming soon, and how to give feedback to shape them

This webinar is for patients, families, and anyone who wants to better understand what it’s like to live with vEDS — and how to feel more prepared.

📌 Watch, learn, and share. These tools were made for you.

Chapters
00:00 – Welcome & Introduction
01:30 – What is it like living with vEDS?
02:52 – What is VASCERN and how does it help?
05:00 – How the MSA Working Group supports vEDS patients
06:37 – Meet the vEDS Patient Advocates (ePAG)
09:44 – Practical Tools for Living with vEDS
09:52 – Pills of Knowledge (short videos)
10:59 – Webinars (live & recorded)
12:20 – The Patient Pathway
13:30 – Clinical Patient Management System (CPMS)
15:09 – Do’s & Don’ts for Everyday & Emergency Care
16:08 – Learn Online – eLearning Courses
16:49 – Upcoming Resources: Emergency Card & Arterial Flowchart
17:35 – Resource Translations & Access
19:00 – How to Share Feedback
20:43 – Key Takeaways & Final Messages
22:33 – How to find the tools on the VASCERN website
27:00 – Q&A Session

Learn more about vEDS and access helpful resources:
👉 https://vascern.eu/group/medium-sized...

Watch more expert insights on vascular ehlers-danlos syndrome (vEDS):
👉    • Medium-Sized Arteries (MSA): Vascular Ehle...  

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