Program and registration Family Weekend 2026
The program of our Family Weekend 2026 is ready and the registration is open! Alexandra and Naomi have created a challenging and varied program, so sign up now. Don’t wait too long! Registration closes on May 17! Program and registration
New members and financial administration system
As of 2026, we have implemented a new membership and financial administration system called Banster. This system offers a wide range of practical functionality for both our members and our organization. The main features are: Members/donors can view and update their own information (such as their address). They can also check the status of their […]
AIVA Conference 2026 – Austria
On March 6 and 7, 2026, the 16th Annual Conference of the Austrian Working Group for Interdisciplinary Treatment of Vascular Anomalies (AIVA) took place in St. Wolfgang am Wolfgangsee. A symposium held at one of Austria’s most beautiful locations. This naturally creates a blend of inspiration and focus—exactly what is needed to delve deeply into […]
Translation team Hogeschool Zuyd 2026
Also this year, the team of Hogeschool Zuyd is once again committed to supporting our organization. Hello! We are team Zuyd Vertalingen, a translation agency run by students in the last year of the Maastricht School of Translation and Interpreting (Vertaalacademie). Every year, from February to June, a new team is there to help you […]
Blog Katie Allen February 2026
I want to start this blog by saying happy early Rare Disease Day. To celebrate this rare disease journey we are on, I want to focus on one aspect of rare disease care that I feel sometimes doesn’t get addressed adequately, which is the emotional toll that simply making appointments can take. The long wait […]
Naomi Rorive – van der Sar- CMTC-OVM Activities Team (CAT)
My name is Naomi Rorive–van der Sar. I am the wife of Laurens and the mother of three sons. Our youngest son, Otis, was born with CMTC. In addition to being a mother, I work as a language coach for non-native speakers and as a homework tutor. Together with, among others, Alexandra, I help organize […]
Blog Arianna Faro February 2026
Hello there, For those who have not read any of my previous posts, my name is Arianna Faro and I have Klippel-Trenaunay syndrome. I was diagnosed at birth, and since then I have had over 75 hospitalization due to various infections and operations. Life has not been easy for me by any any means, but […]
New advisor – Dr. Victor Volovici
Dr Volovici is a skull base and vascular neurosurgeon in the Erasmus MC and Principal Investigator of the Neurovascular Research Line. Current President of the Netherlands Neurovascular Society (NNG). His PhD focused partly on the methodology of clinical research, and his research delves in part into the methodology behind current research into intracranial aneurysm treatment. […]
Clinical trials for new drug against PROS
The biotech company Relay has developed an experimental drug for people with vascular malformations. This medication targets people with a PIK3CA mutation (PIK3CA-driven malformation). The company now plans to test it in clinical trials worldwide. More information
Special video – Paper Tiger
Paper Tiger (2025), is a dystopian short film created at Bournemouth Film school, and supported by CMTC-OVM. In the State of Libertas, citizens are mandated to consume ImmUnity: a gene altering medication. As Commander Josef Reeves struggles to suppress a rising civil resistance, he’s forced to confront his past. Will he stay loyal to the […]