Video impression members’ conference 2025
We have made another video during our 2025 members’ conference to give an impression. There were so many activities that we were not able to include them all in this video. Go to report with video and many pictures of our members’ conference
Blog Katie Allen December 2025
It’s that time of year, Happy Holidays to everyone! It is December on the west coast of Canada, so we are in full rainstorm mode with a very rare scattering of snow, but it is definitely starting to feel a bit like the holiday season as the temperature drops. After a couple of months of […]
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 […]
Mirjam Pruis – Social media
My name is Mirjam Pruis, and I live in the city of Groningen (the Netherlands) with my husband Timon and our three children. Our youngest daughter, Josephine (3 years old in 2025), has a vascular malformation with overgrowth in her leg. About a year after her birth, we came into contact with CMTC-OVM through connections. […]
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; […]