VASCERN News
23 March 2026
Key highlights from the Vascular Anomalies Working Group spring meeting 2026
The Heritable Thoracic Aortic Diseases Working Group (HTAD WG) held its spring meeting in Paris on 12 and 13 March 2026. The first afternoon was a joint session with the Medium Sized Arteries Working Group (MSA WG), and the full day on 13 March was dedicated to HTAD.
The HTAD WG focuses on inherited conditions that affect the aorta and other thoracic arteries, including Marfan syndrome, Loeys-Dietz syndrome, and related disorders. These are conditions that can run in families and, without careful monitoring and management, can lead to serious complications. The meeting covered a wide range of topics, from new research proposals to clinical guidance, registry updates, and patient advocacy.
Joint session with the MSA Working Group
The meeting opened on the afternoon of 12 March with a joint session with the MSA Working Group. The two groups came together for case discussions and research updates, including a presentation on a translational research pipeline for HTAD and MSA conditions.
New research proposals
The dedicated HTAD day began with two new research proposals. The first proposal looks at genetic testing practices across HTAD centres in Europe. Work on the project is in early development. The second proposal focuses on aortic surgery in patients who have previously undergone a related procedure. The project aims to improve understanding of how the aorta changes over time in this patient group. Interested centres have been invited to get involved.
Clinical research updates
The afternoon session included several research presentations. Progress on the Clinical Criteria Compendium for Marfan syndrome, a structured reference document being developed to standardise how clinical signs of Marfan syndrome are assessed across centres, was presented. Work on the manuscript is progressing well.
A PhD student at Ghent University, presented findings from a recently published study investigating telomere length in Marfan syndrome. The study found that telomeres were significantly shorter in Marfan patients compared to matched controls, with shorter telomeres associated with a history of major cardiovascular events. It is the first study of its kind in this population.
There was also an update on the HTAD registry.
Patient involvement
ePAG Co-Chair for the HTAD WG, gave an update on the European Patient Advocacy Group. The HTAD ePAG currently has 4 patient advocates representing a larger patient community of 15 patient organisations across 14 countries, and the group has been working to strengthen its network, with a particular focus on expanding representation in Eastern Europe.
The ePAG is actively involved across a wide range of HTAD activities, from patient pathways and educational resources to clinical trials and registry governance. The meeting also discussed plans for future patient-facing webinars on topics including aortic surgery, pregnancy, and eye health in HTAD conditions.
The meeting closed with a discussion of future priorities and next steps across the group’s projects. The HTAD WG would like to thank everyone who travelled to Paris, joined virtually, and contributed their time and expertise.
Related resources
→ HTAD Working Group — find out more about the HTAD WG, the expert centres in our network, and the conditions we cover, including Marfan syndrome and Loeys-Dietz syndrome
→ HTAD Patient Pathway — guidance covering diagnosis, management, and follow-up for heritable thoracic aortic diseases
→ Do’s and Don’ts for HTAD — practical recommendations for patients and clinicians on common and emergency situations in HTAD care
→ Pills of Knowledge (PoK) — short expert videos on HTAD topics including Marfan syndrome, aortic surgery, pregnancy, and exercise, available in multiple European languages
→ HTAD ePAG — meet the patient advocates who represent people living with HTAD conditions within VASCERN, and find patient organisations across Europe