VASCERN News
23 March 2026
Key highlights from the Vascular Anomalies Working Group spring meeting 2026
The Medium-Sized Arteries Working Group (MSA WG) held its spring meeting in Paris on 11 and 12 March 2026, bringing together its members, and patient advocates to review progress and plan next steps across a number of key areas. The second day closed with a joint session with the Heritable Thoracic Aortic Diseases Working Group (HTAD WG).
The MSA WG focuses on rare conditions affecting medium-sized arteries, most notably vascular Ehlers-Danlos syndrome (vEDS), a heritable connective tissue disorder that can affect the walls of arteries, the bowel, and other organs. The meeting covered a lot of topics.
New clinical guidelines for vEDS
The launch of a new set of clinical practice guidelines for vEDS was one of the most significant items on the agenda. A writing committee of international experts has been formed, and work is now under way. Publication is expected in the coming years, with translations into multiple languages planned to ensure the guidance reaches clinicians and patients across Europe.
Delphi study and new Do’s and Don’ts
Progress on a Delphi study bringing together vEDS experts from across Europe and North America to reach consensus on key aspects of clinical practice was discussed. Work on the manuscript is ongoing. Four new Do’s and Don’ts factsheets were presented and validated at the meeting, covering diagnosis, genetic diagnosis, postpartum care, and follow-up and monitoring. These are designed to be useful to both patients and clinicians.
Registry and emergency cards
The MSA registry was a significant item on the agenda, with members discussing the practical steps required for each participating centre to begin enrolling patients and hearing updates from several centres on where they are in the approval process.
The group also reviewed progress on the vascular emergency card, which gives patients with vEDS essential medical information to share with treating clinicians quickly in an emergency. Translations are under way in several European languages.
Joint session with the HTAD Working Group
The afternoon of 12 March brought the MSA and HTAD Working Groups together for a joint session covering case discussions, updates on the vEDS guidelines and Delphi study, and a presentation on a translational research pipeline exploring how findings from biobank research can be applied to improve clinical care for patients with HTAD and MSA conditions.
The meeting closed with a discussion of future priorities, including plans for the VASCERN Summer School in Paris in September 2026. The MSA WG would like to thank everyone who travelled to Paris, joined virtually, and contributed their time and expertise.
Related resources
→ MSA Working Group — find out more about the MSA WG, the expert centres in our network, and the diseases we cover
→ vEDS Patient Pathway — guidance outlining the journey from diagnosis through treatment and management for vascular Ehlers-Danlos syndrome, including red flags and follow-up recommendations
→ Do’s and Don’ts for vEDS — expert consensus recommendations for patients and clinicians covering common and emergency situations in vEDS care
→ Pills of Knowledge (PoK) — short expert videos on vEDS topics including genetics, arterial complications, pregnancy, and monitoring, available in multiple European languages
→ MSA ePAG — meet the patient advocates who represent people living with vEDS and other MSA conditions within VASCERN, and find patient organisations across Europe