Drs. Elyse Verboom, MSc (Netherlands) – Medical advisor
Drs. Eylse Verboom, Msc, has been working in the Erasmus MC Sophia Children’s Hospital since 2015. From 2016 to 2021, she studied to become a general paediatrician. In 2021, she began her sub-specialism in paediatric haematology and shared care paediatric oncology. Since 2021, she has also been a part of the multidisciplinary WEVAR team (Working […]
Webinar 26 March 2022 – Experiences from and with parents
Life as a parent of a child with a vascular malformation (but also other conditions) is not always easy. Possibly you try to do as much as you can for your child and perhaps everything as perfectly as possible. But can you do everything perfectly and should you? Do you do it all by yourself […]
Family Day 2022: Efteling
Due to Covid-19, it has not been possible to organise a ‘proper’ Family Day for a few years. The last time was in 2019. This year we could finally organise our Family Day in full, with 80 participants from Belgium, Germany, and the Netherlands. On Saturday the 2nd of July, the attendees gathered at around […]
New series leaflets/booklets
In collaboration with various organizations and doctors, we have developed a number of series with new folders/booklets in at least 5 languages. Think of new brochures about AVM, CMTC, DCMO, Klippel-Trenaunay. We would like to thank the European Commission for sponsoring the development of the Parent Support Guide. More information
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 […]