10. Pregnancy, family planning & vascular malformations
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, a Transversal Pregnancy Working Group has worked on this practical booklet, “What you need to know about family planning, pregnancy, delivery and contraception when living with a […]
Tari de Jong – Secretary
My name is Tari de Jong. I was born with a port-wine stain, also known as a capillary malformation, on my right arm. Since around 2017/2018, this condition has led to some sports-related issues, which eventually brought me to become a member of CMTC-OVM. It’s incredibly valuable that such an organization exists for children nowadays […]
Erik Kloosterman – Treasurer
My name is Erik Kloosterman. I first came into contact with the CMTC community through the website. Our oldest son was born with several marks on his body, but in the maternity ward no one could tell us exactly what they were. The website, however, provided extensive information and personal stories, which immediately made us […]
Blog Katie Allen November 2025
Conference season is well and truly underway. I just wanted to take the opportunity in this blog to talk about the amazing opportunities and experiences you can have while joining conferences, family days, or other initiatives from patient organizations. At the end of last month, I had the chance to virtually attend the CMTC-OVM Global […]
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