In 2023, the ‘international conference on Vascular Anomalies’ (VAC) was organized. In 2025, this conference was organized again and this year in Berlin from February 11 to 14. Around 170 physicians, professors, researchers and various patient organizations participated.
The aim of the conference is to share the latest developments in research (basic, translational and clinical) to accelerate the development of new treatment strategies for vascular malformations.
As patient organizations, we have become acquainted with 2 pharmaceutical companies.
One company has developed a new medication for people with mutations of the PIK3CA gene with fewer side effects than sirolimus and alpelisib. This medication is currently in a ‘clinical trial’ (testing with people) in the USA.
The other company has been able to replace the medication that normally has to be taken as a pill (orally) with a gel that is applied to the vascular malformation.
The conference was kicked off with a presentation by Petra Bogards, Patient Advocate and co-chair of our VASCA working group in VASCERN (European Reference Network Vasculaire Malformaties).
VAC 2025 Patient Role and Engagement
Every day patient testimonies were shown by video which made a great impression on those present. We showed a shortened video of an interview with Tessa Schiethart.
Full interview
Ana Angulo-Urarte gaf een presentatie ‘exploring the role of PIK3CA variants in vascular malformations’ – a combined molecular and experimental modeling strategy.
Emmanuel Seront ‘new promising ways for sirolimus treatment – from continuous to intermittent administration of sirolimus in slow-flow vascular malformations.
Maroeska te Loo ‘venous malformations and identifying the patient at risk for thrombosis – what do we have.
Emmanuel Seront ‘improving targeted therapies in complex lymphatic anomaly – two cases of synergistic efficacy of traumetinib and sirolimus.
Whitney Eng – real-world experience using alpelisib in 26 vascular anomaly patients treated at a single institution
Julien Coulie – Somatic KRAS variants in limb overgrowth with capillary malformation and fast-flow, with or without slow-flow lesions – a distinct entity named KROS.
Laurence Boon – clinical use of medicines in fast-flow vascular malformations.
We also had a stand here again.
