Members conference 2021
On Saturday October 30, 2021 we will organize our annual global members conference in the Netherlands. Due to the COVID-19/Corona virus, we unfortunately have to organize this conference ‘online’ this year. More information & registration Please note: if you have previously registered for our conference on location, please register again. We expect our conference to […]
Webinars
We regularly organize public webinars. Reports are also made of these webinars. Webinar overview and registration Webinar reports Do you have an idea for a webinar topic? Please contact us
Registration global members conference on location and online
On October 30, 2021 we will again organize our worldwide ‘real’ members’ conference in the Netherlands! This will be a ‘hybrid’ conference as we offer our members from all over the world to follow our conference ‘online’ as well. The conference will start with a welcome on October 29 and will last all day on […]
Collaboration Greek organisation rare diseases & CMTC-OVM
We have started a collaboration with the Greek organization for people with rare diseases. It is high time to really start working together with the aim to help patients with CMTC and other blood vessel diseases and their families where possible. More information
Royal decoration for Lex van der Heijden
The day before King’s Day in the Netherlands, it is the tradition to reward volunteers with a royal decoration. To his surprise, our chairman, Lex van der Heijden, was appointed Officer in the Order of Oranje-Nassau. The Order of Oranje-Nassau exists since April 4, 1892. Persons appointed as Officers often have a national or even […]
First edition VASCA Magazine
The purpose of this brand new publication is to inform patients, caregivers and healthcare professionals about current developments in diagnosis, treatment and research on vascular malformations. More information
Expansion of our translation/interpreter team
We have volunteers in several countries who help us with translation work. In the Netherlands, for example, we work together with Hogeschool Zuyd. Zuyd Vertalingen is a translation agency run by fourth-year students at the Translation Academy. Our team currently consists of 5 full-time employees who are supported by six French-speaking exchange students. While we […]
Another new project: teachers leaflet!
We are happy to announce that we have once again found financing for a project! Novartis will be our sponsor. We will develop two leaflets: one for primary school teachers and one for secondary school teachers, both in five languages (German, English, French, Dutch and Spanish). With this leaflet, we want to inform teachers about […]
EuropaDerm initiative
We are part of the Global Skin Foundation (based in Canada) and they have started the European EuropaDERM initiative. We participated in the first (online) ‘Envisioning EuropaDERM event’ that was organized on January 29, 2021. For two hours we discussed with other (international) leaders of European patient organizations a common path for the European dermatological […]
Collaboration with ECH
We have started a new partnership with the European Connected Health Alliance (ECH). The goal of ECH is to connect organizations and individuals in the field of digital health. Currently, more than 750 organizations are affiliated with ECH from 78 countries and can reach 4.4 billion people. More information