The ISSVA (International Society for the Study of Vascular Anomalies) once again organized its international congress from May 19–22, 2026, in Philadelphia (USA). Approximately 700 participants attended in person, and, as in previous years, there was also an option to participate online. ISSVA is the leading global organization in the field of vascular malformations.
The congress featured approximately 100 presentations.
Photography and video recording during the sessions were not permitted, which means we are unable to create our own summaries and reports of the presentations. We have therefore asked several speakers to prepare summaries of their sessions for us. However, this process will take some time, and it may be a while before these summaries become available.
Dinner with Relay
On Monday evening, a dinner was organized for patient organizations by the pharmaceutical company Relay Therapeutics. We had already met representatives of the company last year at another conference.
Relay Therapeutics has developed a new medication for PROS (PIK3CA-Related Overgrowth Spectrum) and is currently conducting clinical trials in several countries. This new treatment is being developed as an additional therapeutic option alongside existing medications such as Sirolimus and Alpelisib.
The role of patientorganisations in ISSVA
Patient organizations are now also being given a formal role within ISSVA through the establishment of the Patient Support Committee. This committee serves as a collaborative bridge between the vascular anomaly patient community and medical professionals.
Its mission is to strengthen patient representation, engagement, and advocacy within ISSVA by identifying unmet needs, supporting educational initiatives, and providing advice on research and clinical priorities. The committee aims to ensure that the patient perspective is incorporated into ISSVA’s activities and future direction.
Members of the committee do not represent specific patient organizations or individual groups; rather, they represent the vascular anomaly patient community as a whole.
Stand
ISSVA is increasingly providing patient organizations with opportunities to contribute and participate. One example of this was the opportunity for patient organizations to host exhibition booths in the area where conference breaks and lunch sessions were held, allowing for direct interaction with healthcare professionals and researchers.
Our informational materials were once again taken quickly by physicians and other attendees. As in previous years, a full package of mini Dutch stroopwafels disappeared each day.
Our booth attracted considerable attention thanks to our new colorful standing banner, our informational materials, our traditional Dutch clog slippers, and, of course, the stroopwafels. The number of people who recognize—or remember—our organization appears to have a direct correlation with the stroopwafels. In addition to the stroopwafels, several 250-gram packages of Limburg chocolate were distributed to selected individuals. Unfortunately, this has to be done selectively because of the total weight limitations for transporting the banner, documentation, and chocolate.
The number of booths hosted by other patient organizations was higher than in previous years. HEVAS was once again represented at the conference as well.
Passing away Dr. John Butler Mulliken
On January 20, 2026, Dr. John Mulliken passed away.
Dr. Mulliken was truly one of the founding figures of our field. His vision, intellectual clarity, and unwavering dedication helped shape vascular anomalies into the specialty it is today and also laid the foundation for ISSVA itself. Generations of physicians and researchers — many of us personally included — continue to build upon his legacy.
His wife and daughter were present, and a moving tribute was held, featuring images and a deeply touching speech.
Read moreFirst results Relay ‘clinical trial’
Relay Therapeutics presented the first results of its clinical trial, which appear promising. They organized a dedicated session for patient organizations to share these early findings and provide updates on the ongoing study. Read moreVisible and invisible
ISSVA is primarily a scientific organization. Fortunately, there is also growing attention within ISSVA to the psychological and psychosocial aspects faced by patients and their families.Social event
On the eve of the final day of the four-day congress, a social event was also organized at Reading Terminal Market. This is a building with a huge collection of small food stalls. In addition, there was live music, which led to quite a bit of dancing.