Blog Arianna Faro January 2026
About a week back, I was walking the mall with my walker in tow when a young man wearing a volunteer apron approached me. He was standing near a boothe that said Children’s Hospital Boston (CHB), along with another man volunteer. Upon approaching me, he said something along the lines of “hello, can I tell […]
Mandy (United Kingdom)
I was born in 1975 & straight away my extreme overgrowth condition was visible with my lower limbs being at least 4-5 times larger & a club foot. I wasn’t expected to live more than 2 weeks, during which time my mum wasn’t even allowed to see me! My early years did involve several visits […]
Promotion Dr. Patrick Kemperman
On Friday, December 12 2025, dermatologist Patrick Kemperman, one of our advisors, successfully defended his PhD at the University of Amsterdam. His research focused on so-called delusional infestation (also known as parasitic delusion): a rare psychiatric disorder in which individuals are convinced that parasites or insects are present on or in their body, despite the […]
Dr. Dario Teplisky (Argentina) – Medical advisor
Darío J. Teplisky, MD is a pediatric interventional radiologist based in Buenos Aires, Argentina. He coordinates the Interdisciplinary Vascular Anomalies Group at Hospital de Pediatría Juan P. Garrahan and the Center for Vascular Anomalies at Sanatorio Mater Dei. He is co-director of PEDimage, a pediatric imaging center, and founder and current president of the Ibero-American […]
CORD members meeting 2025
Our Patient Advocate Katie Allen attended the CORD membership meeting on behalf of our organization. The day started in Ottawa with the Rare Multiverse showcase and the opportunity for in-person members to interact and meet with members of parliament. This was not available to Zoom meeting members, but apparently was very successful. It provided different […]
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 […]
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 […]