VASCERN News
10 April 2025
Pregnancy, Family Planning & Vascular Anomalies Booklet Now Available
On 2 April, the VASCERN Medium-Sized Arteries (MSA) Working Group met at Erasmus University Medical Center in Rotterdam for its spring meeting. The agenda covered progress on research, training, patient-centred care, and new collaborative projects with the aim of improving outcomes for people with vascular Ehlers-Danlos Syndrome (vEDS).
The meeting opened with a session on the Delphi study, led by Dr Michael Frank and Dr Ingrid van de Laar (MSA WG Chair and Co-Chair), focused on preparing for the second round. The study aims to build expert consensus around key aspects of vEDS management, laying the groundwork for more unified clinical practice across the network and beyond.
This was followed by a session on VASCERN’s future developments, presented by Julie Hallac (VASCERN Project Manager) and Dr. Gloria Somalo Barranco (VASCERN Science & Education Project Officer). They provided updates on the Summer School and other training activities aimed at strengthening learning and cooperation within the network.
After a short coffee break, the group reviewed short educational videos and discussed both recent and upcoming webinars. Feedback was shared openly, with the goal of ensuring these resources are clear, accessible, and relevant for both professionals and patients.
The discussion then turned to the vascular emergency flowchart, a tool designed to support healthcare professionals in dealing with a vEDS patients in emergency situations. Dr. Michael Frank led this session, focusing on clarity, practical use, and consistency across centres.
In the early afternoon, the group moved into action-planning mode. Work officially began on the development of a guideline document for vEDS, introduced by Dr. Anders Wanhainen, with key specialties identified and a timeline put in place. A session on developing partner training followed, with contributions from Dr. Laura Muiño Mosquera and Dr. Majda Vrkic, reinforcing the value of training that includes both theoretical and practical perspectives.
Eva Collado, the MSA European Patient Advocacy Group (ePAG) Co-Chair, then delivered an update on ongoing projects and future initiatives. Her reflections reminded the group of the importance of keeping patients’ needs and experiences at the centre of every initiative.
To close the day, an important update on the MSA registries followed, with Pim Kamerling (VASCERN Data Steward) sharing the latest progress. These registries are vital for tracking patient outcomes, identifying trends, and supporting cross-border research.
From research to patient advocacy to emergency care tools, the spring meeting in Rotterdam reflected the MSA Working Group’s ongoing commitment to collaboration, consistency, and patient-focused progress across the VASCERN network.