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VASCA Workgroup Conference spring 2022 – Brussels

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VASCA Workgroup Conference spring 2022 – Brussels

Report VASCA Workgroup Conference spring 2022 – Brussels

On the 6th of April 2022, the annual Spring Meeting of the VASCA work group (a division of ERN VASCERN) was organised in Brussels.

VASCERN is one of the European Reference Networks (ERNs) in the field of rare multisystemic vascular diseases. We as an organisation are affiliated with the ERNs VASCERN and SKIN.

All care providers belong to reference centers and centers of excellence recognised in their country.

These care providers have developed expansive European collaborations via their specific networks for rare diseases. They joined this ERN to promote and strengthen European collaboration in the field of rare multisystemic vascular diseases, by following a common and multidisciplinary approach to patient care with the aim of addressing challenges together.

The care providers are committed to improving diagnosis, treatment and care for and with patients by making full use of all chances and activities that VASCERN can offer. This conference is unique as doctors and patient organisations from throughout Europe work together. It was a ‘hybrid’ conference, meaning that participants attended both physically and via a videolink.

In total, around 30 people from 13 countries participated in the conference (primarily doctors, professors and patient groups).

More information about VASCERN

VASCA publications

Do’s and don’ts

As many (vascular) diseases are quite rare, information about these diseases is rarely available, or not available at all.

What should a doctor do and not do with a patient? This concerns not only planned visits to a doctor but also emergencies/accidents involving a doctor and first aid.

The other approach is what a patient themselves should or shouldn’t do. Think of sport, nutrition, etc.

Practical lists were made for the different conditions: Do’s & Don’ts

ISSVA conference poster

From the 10th-13th May 2022, the worldwide conference on vascular malformations has been hosted in Canada.

We also participated (we had a stand there too to showcase our organisation).

Prof. Dr. Miikka Vikkula has developed a poster with several others that will also be used at the conference to showcase the VASCERN organisation in the context of how doctors and patient organisations work together in Europe.

Orphanet codes

Orphanet is a unique source that collects and completes knowledge about rare diseases in order to improve the diagnosis, care and treatment of patients with rare diseases.
Orphanet strives to provide high-quality information about rare diseases and to ensure that all stakeholders have equal access to information.

Orphanet also maintains the Orphanet rare illnesses nomenclature (ORPHAcode).

This is essential to the improvement of the visibility of rare illnesses in healthcare systems and research information systems.

More information Orphanet

Within the VASCA team, there is a separate working group for the Orphanet classification.

New scientific paper using Orphanet data provides prevalence figures on number of people living with a rare disease globally


ISSVA classification

The ISSVA (International Society for the Study of Vascular Anomalies) is a multidisciplinary international organisation made up of doctors, scientists and care providers united through an interest in vascular anomalies.
More information ISSVA

We had a discussion about the naming of conditions in particular. What can be best included in a name to ensure that on the one hand, the name isn’t too specific, meaning that the amount of names becomes enormous and that on the other hand the name is sufficiently clear and the number of names stays within limits.
Example: in Klippel-Trenaunay overgrowth can occur in the legs in both length and girth. With a new name, would a distinction be made here, and how do you indicate this in the name? An option is to include the gene mutation in the name. Diffuse Capillary Malformation with Overgrowth could therefore become DCMO-PIK3CA or DCMO-GNA11.

This discussion is not over yet.


Prof. Dr. Leo Schulze Kool shared the current status of the database, in particular regarding the recording of data from patients with vascular malformations.


During our conference, it was announced that the medicine Alpelisib has been approved for use in the USA by the Food and Drug Administration (FDA).

More information

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