VASCERN News
25 July 2025
New HHT Do’s & Don’ts Factsheets: Long Flights, Nosebleeds & Pregnancy
The replay of the recent VASCERN webinar, “Empowering you to live better with vascular Ehlers-Danlos syndrome”, is now available to watch on the VASCERN YouTube channel.
Hosted by the Medium Sized Arteries Working Group (MSA-WG), the session is dedicated to supporting individuals and families affected by vascular Ehlers-Danlos syndrome (vEDS)—a rare genetic condition that can significantly impact arteries and connective tissue.
Through a combination of expert insight and patient perspectives, the webinar walks viewers through practical tools and trustworthy information aimed at helping people with vEDS live more confidently and safely.
What the webinar covers
The session begins with a patient-centred overview of what it’s like to live with vEDS and continues with presentations from the MSA-WG team and patient advocates. Key topics include:
- What VASCERN is and how it supports people with rare vascular diseases
- How the MSA-WG helps patients with vEDS across Europe
- An introduction to the vEDS ePAG (European Patient Advocacy Group) representatives
- Practical tools such as the Pills of Knowledge (short videos), recorded webinars, and a clear patient pathway
- Emergency planning resources, including Do’s & Don’ts for daily and emergency care
- Updates on upcoming resources like the emergency card and arterial flowchart
- How to access these tools in multiple languages
- Ways to give feedback and contribute to future improvements
A short walkthrough is also provided to show viewers how to find all these resources on the VASCERN website, ensuring easy access for patients and healthcare professionals alike.
Who might find this useful
This webinar is full of helpful insights if you’re living with vEDS, supporting a loved one, or working in a healthcare role related to vascular disorders. It’s especially valuable for anyone looking for credible, easy-to-understand tools to support daily life and emergency care.
Watch the full replay here.