The ISSVA (International Society for the Study of Vascular Anomalies) held another international congress from April 23–25, 2025, in Paris. A total of 410 participants attended in person and 162 online, representing 49 countries. ISSVA is the global organization in the field of vascular malformations.
Photography and video recording of the sessions were not permitted, which means we are unable to produce our own summaries, etc. We have asked several speakers to provide summaries of their sessions for us. This process will take some time.
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Florence Coulet (invited) – Can genetics help? Liquid biopsy was successful in 25 out of 30 cases.
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Olivia Boccara – How to obtain (and what is) the best material from an affected location for genetic research.
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Alexandra Borst – AVM.
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Emmanuel Seront – Research on sirolimus.
What is the rol of patient organisations
Caroline van de Bosch, member of ERN ePAG VASCERN (of which we are also a part), gave a presentation on the role of patient organizations in general, as well as their potential value for ISSVA. For some time, there have been ongoing discussions about the inclusion of patient organizations within ISSVA, including a possible role on the board. Following Caroline’s presentation, it became clear that the majority of attendees were not in favor of allowing patient organizations to join the ISSVA board.Booth
The ISSVA organization is increasingly giving patient organizations a voice. One example of this is that patient organizations were allowed to have a booth in the area where breaks were held, which was also the main access point to the session halls—in short, a prime location.
Our informational materials were once again picked up quickly by physicians. Every day, an entire box of mini stroopwafels was gone by the end of the day.
We once again had the most extensive collection of informational materials and the most colorful booth.
The other patient organization for people with vascular malformations, HEVAS (active only in the Netherlands), was located next to us, which allowed us to share materials such as the VASCA magazine.
