VAC 2023 – Brussels

Organised by the DeDuve Institute in Brussels, Belgium, the Vascular Anomalies Conference took place from the 31st of January to the 3rd of February. One of the directors of the Institute is Prof. Dr. Miikka, Vikkula, who is also one of our advisors.

There were around 220 people from around 15 countries present, including, among others, doctors, professors, and researchers. This was a very high-calibre conference.

Unfortunately, photography wasn’t allowed, mainly because many presentations contained material that has not yet been published.

Alexandra and Lex participated in the conference on behalf of our organisation.

Not only did we have a poster, where we used graphics to illustrate the possible journeys of patients and their families, but we also had a stall.

Our stall attracted a lot of attention. We had taken leaflets and booklets with us about a number of conditions and disorders and an entire series of booklets no specific to any one illness, such as the parent support and post-diagnosis guides.

There were also cards with a QR-code on the table, so that people could order leaflets and booklets in various languages directly from our website.

At many conferences, there is the opportunity to do a poster presentation. Of course, we made use of this opportunity too. In two rooms there were nearly 100 posters hung up and visitors could ask the presenters for further explanation. The posters were mainly medically- and genetically oriented. Our poster showed the journey of a CMTC patient.

In total, around 15 people learned about our organisation in this way. A team from Singapore was one of the parties that showed particular interest in how we work as a patient organisation. They also knew ‘our’ Prof. Dr. Maurice van Steensel (he has worked in Singapore for many years)!

Maria Barea gave a short presentation from the perspective of a patient, with the goal of making doctors and researchers aware of the patient.

Maria is one of the team leaders of our European Patient Advocacy Group (ePAG) for vascular malformations (VASCERN).

We see more and more that doctors and patient organisations interact with each other at conferences. Prof. Dr. Laurence Boon argues that this interaction should in fact be mandatory.

The following topics were addressed at the conference:

1. Venous malformations and TIE2-PI3K signalling.
2. The development of methods and tools.
3. Venous / lymphatic malformations and PI3K signalling.
4. Cerebral cavernous malformations and MAP 3K3 signalling.
5. Arterial-venous malformations and RAK-MAPK signalling.
6. Hereditary Haemorrhagic Telangiectasia (HHT) / BMP.
7. Complex lymphatic anomalies and signalling.
8. Vascular tumours and CMS.

A lot of research is carried out on zebrafish and mice.

Every day, a patient story was told via video. Hevas (Dutch patient organisation) was one of the organisations that screened a number of videos in which a patient told their story. In this way, doctors and researchers were afforded a good picture of reality and of what patients grapple with in (daily) life.

Patreek Singh (FinnAdvance) gave a presentation about the use of models other than the use of zebrafish and mice. The precision of these models is greater than when using animal models.

Hans Schoofs gave a presentation about the PIK3CA gene and the possible effects on venous lymphatic malformations.

Guillaume Canaud gave a presentation about the medicine alpelisib.

Rong Wang gave a presentation about arteriovenous malformations (progression and regression).

One of the speakers was Dr. Sarah Sheppard from the American National Institute of Health (NH). We developed the support guide for parents of unborn children together with her and her team. Her presentation was entitled ‘‘Mosaic activating variants in KRAS cause central conducting lymphatic anomaly which responds to MEK inhibition’.