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May 28 2021

Review of the Vascular Anomalies Working Group’s 2-day Virtual Spring Meeting!


Originally planned to be a face-to-face meeting, the annual Spring Meeting of the Vascular Anomalies Working Group (VASCA-WG) took place online on May 19th and May 25th, 2021.

Chaired by Prof. Miikka Vikkula (VASCA-WG Chair), this meeting was attended by 17 healthcare professionals from 10 EU countries. The patients were equally represented by European Patient Advocacy Group (ePAG) Co-Chair and Deputy Co-Chair for VASCA, Caroline van den Bosch and Maria Barea, as well as additional VASCA patient advocates: Petra Borgards, Aaike van Oord and Lex van der Heijden.

This 2-day event was full of discussions! The first day started with a talk about the coding systems used in each hospital, followed by a discussion on the integration of the new HCP Full members in the VASCA-WG (hopefully by the end of the year). Next, there were updates on the various VASCA sub-WGs (e.g. Genetics sub-WG, Surgery sub-WG, Anesthesia sub-WG), as well as clinical trials. Dr. Maroeska te Loo made a presentation on “Alpelisib: where do we stand now?”. Then, the group talked about the Clinical Patient Management System (CPMS) and the national networks in each country. Finally, they ended the day with an ePAG report: Caroline van den Bosch updated the group about all of their activities. She talked about the first edition of the VASCA magazine that was published online in April.

The group started the second day with a discussion on how to develop guidelines. They also talked about the ongoing research projects, the progress made by the VASCERN Pregnancy-WG and the Orphanet Classification. Dr. Willemijn Klein presented the VASCA Lymphangiography Task Force and their progress to date (including the upcoming EJP RD – European Joint Programme on Rare Diseases – Advances in diagnostic and therapeutic methods for lymph flow abnormalities workshop) and Prof. Leo Schultze Kool (VASCA-WG Co-Chair and Chair of VASCERN’s Registry WG) updated the group on the VASCA Registry Project. Then, they discussed their first VASCA webinar and what could be the topics for the next webinars. The VASCA Patient Advocates presented their “Patient Journeys” and this last day of their Spring Meeting ended with a general discussion (suggestions for improvement, collaborations, goals).

This 2-day meeting was a very fruitful one for the group and a lot is coming in the future! We thank all of the VASCA-WG members for all their work and contributions!

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