Leg length discrepancy (LLD)
This study looked at children with a capillary malformation (CM) on the leg — a birthmark that can sometimes affect tissue and bone growth. The goal was to find out how often these children develop a leg length discrepancy (LLD) and which factors increase that risk. More information
13. Communication improvement between healthcare professionals and rare disease patients & caregivers
Our CMTC-OVM organization has been participating in the European Reference Networks (ERNs) for many years. We are a member of ERN VASCERN and ERN Skin. Within ERN VASCERN, there is a Transversal Psychology Working Group, of which we are also a part. Together with a European team, primarily consisting of psychologists, we have worked on […]
Blog Katie Allen oktober 2025
One of the most common questions I get is “How do you explain …”, which makes sense; anyone with a visible difference knows this is a frequent question. However, it can be complicated by the rarity of some of our vascular malformations. If someone is wearing an insulin pump, someone may ask what it is; […]
Members’ conference NL 2025
Around 65 people participated in our conference (a small number joined online from Canada and Slovakia). Participants came from Belgium, Germany, England, and the Netherlands. Quite a few members turned out to be on vacation, which meant we had fewer participants than expected. We will approach this differently in 2026. We asked both the participants […]
EADV 2025 – Paris
The EADV conference was held in Paris from 17–20 September 2025. The total number of participants in Paris exceeded 20,000! In addition, it was also possible to participate online. On Monday, Lex travelled to Paris to take part in the Global Skin meeting on Tuesday. The position of Patient Organisations (POs) within the EADV has […]
Take part in the EURORDIS Rare Disease Barometer 2025
Take part in the Rare Disease Barometer, available in 25 languages. This annual survey is organised by EURORDIS – the European Organisation for Rare Diseases. https://www.sphinxonline.com/…/MH…/questionnaire.htm
Blog Katie Allen September 2025
One of the most common questions I get is “How do you explain …”, which makes sense; anyone with a visible difference knows this is a frequent question. However, it can be complicated by the rarity of some of our vascular malformations. If someone is wearing an insulin pump, someone may ask what it is; […]
Impression members’ conference 2024
An impression of our members’ conference 2024.
New European project NARRATIVE
European Research Project NARRATIVE Launched The new project NARRATIVE of the VASCA Working Group (of which CMTC-OVM is a member) within the European Reference Network VASCERN aims to gain more knowledge about the course and treatment of rare vascular anomalies. Vascular anomalies are rare and sometimes complex and difficult to treat. NARRATIVE is establishing a […]
Naomi Rorive-van der Sar – Secretaris
I am Naomi Rorive-van der Sar, wife of Laurens and mother of three sons: Mason, Phaelan, and Otis. Otis was born in 2019 with red, blue, and purple spots on his skin. A few days after his birth, he was examined during the WEVAR consultation at Erasmus MC by Prof. Dr. Pasmans and her team. […]