Key highlights from the Vascular Anomalies Working Group spring meeting 2026

The Vascular Anomalies Working Group (VASCA WG) met in Brussels on 16 and 17 March 2026 for its spring meeting. Members came together from across Europe to review ongoing work, share updates, and plan next steps across a number of important areas.

Vascular anomalies are a group of rare conditions caused by abnormal development of blood or lymphatic vessels. They vary widely in type and severity, and because they are rare, patients can wait a long time for an accurate diagnosis or access to specialist care. The VASCA WG brings together clinicians, researchers, and patient advocates to address this, working to improve how these conditions are diagnosed and treated across Europe.

Clinical guidelines

A significant part of the meeting was dedicated to clinical guidance. The group made progress on “do’s and don’ts” factsheets for two types of vascular anomaly: arteriovenous malformations (AVMs) and lymphatic malformations (LMs). These practical factsheets are designed for both patients and clinicians, setting out clearly what good care looks like and helping everyone involved make informed decisions. 

Work also continued on an AVM pathway manuscript, which will provide a shared European framework for the assessment and management of AVMs. In addition, the group discussed outcome scales: the measures used to track how patients are doing over time. Agreeing on consistent outcome measures is an important step towards being able to compare results across centres and countries. 

Registries and research

Patient registries are databases that collect information about patients with a particular condition, and they are a vital tool in rare disease research. Because conditions like vascular anomalies affect relatively few people, pooling data across multiple countries is often the only way to gather enough information to draw meaningful conclusions. The meeting included updates on both the VASCA registry and the NARRATIVE registry.

The group also discussed research governance, including how to put in place the ethics approvals needed to run studies across multiple countries. This kind of framework is essential for the large-scale European research that can really make a difference for patients.

One specific area of focus was Kaposiform Haemangioendothelioma (KHE), a rare vascular tumour that most often affects young children. Early planning for a KHE cohort study was discussed, alongside updates on clinical trials relevant to the wider vascular anomaly community.

Patient involvement

The second day of the meeting began with a dedicated session for the ePAG — the European Patient Advocacy Group, which represents patients and families within VASCERN. Patient advocates shared updates and priorities from their communities, including discussion of a new information document on pregnancy and contraception for people with vascular malformations. This is a topic that many patients have questions about, and having clear, reliable information available is important.

The group also heard an update on a patient-focused webinar held earlier in March, and discussed how to ensure that information about clinical trials reaches patients in a clear and accessible way.

Looking ahead

The meeting closed with an open discussion about future priorities. Members considered which clinical protocols to develop next, and what new research questions to focus on. There was also discussion of VASCERN’s broader activities, including genetics resources, educational programmes, and opportunities for collaboration with international partners.

The VASCA WG would like to thank everyone who travelled to Brussels or joined virtually, and all those who contributed their time and expertise to making the meeting such a productive one.