Clinical features of vascular malformations and associated gene mutations
Sporadic vascular malformations (VMs) is a large group of disorders of the blood and lymphatic vessels caused by somatic mutations in several genes—mainly regulating the RAS/MAPK/ERK and PI3K/AKT/mTOR pathways. More information
Annual report 2021 published
We have, once again, published our annual report and our annual accounts. We would like to summarise a few points. We are totally transparent. We display our financial figures, annual reports, Articles of Association, etc on our website. Not only is this required by law, but we want to do this as an organisation, too. […]
Overview ‘isolated and classic CMTC’
Dr. Millan Patel, one of our advisors, contributed to an article about the different types of CMTC. More information
Our Eden has won another prize!
Congratulations to Eden Quine-Taylor, aged 18, from Crickhowell in Wales, who has won our Ones to Watch award (sponsored by EON Productions) at the 2022 Into Film Awards. Eden has CMTC and is also one of our ambassadors. More information about the prize More information about Eden
Alexandra Haan – Treasurer
My name is Alexandra Haan and I am a single mother of two. My eldest has a venous-lymphatic malformation around his left eye, temple, nose, forehead, and in the skull, and my youngest has a developmental language disorder. We live in Dordrecht and have travelled a lot (to New York, Berlin, Boston) due to my […]
Laurens Rorive – Communication
My name is Laurens Rorive and I am Otis’ father. Otis was born in 2019 with marks covering his body, and so began our medical search. Fortunately, four days after his birth, we ended up at the Sofia Children’s Hospital for the WEVAR (WErkgroep VAatafwijkingen Rotterdam – Vascular Malformations Working Group Rotterdam) consultation hour. Due […]
Information & registration worldwide Members’ Conference 2022
After our last ‘real’ global Members Conference in 2019, it has not been possible for a number of years due to COVID-19 to organize a conference where you can see each other in person. In 2022 this will be possible again and that is also our 25th anniversary year!
Family Day 2 July 2022: de Efteling
Finally we can organize our International Family Day again! On Saturday 2 July we are going to the Efteling! There is something for all ages to experience from Fairytale Forest to all kinds of roller coasters. More information and registration
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 […]
Launch Global Dermatology Coalition
On May 25th 2022 a patient-led multi-stakeholder group of like-minded organizations – including dermatology patient organizations, health care professionals (dermatologists and dermatology nurses), researchers, and industry – announced the formation of the Global Dermatology Coalition. This announcement comes during the 75th World Health Assembly in Geneva, as a first step in changing perceptions about the […]