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 […]
Dr. Federica De Majo – Focal point AVM Brain
My name is Federica De Majo. I am Italian, born in 1993, and I live in Utrecht, a lovely Dutch city, with my boyfriend Daniel, who is originally from Mexico. I work as a senior scientist and consultant for a biotech company. In March 2025, we lost our first son, Tommaso, to a very severe […]
CMTC-OVM Rare Disease Day video
Op 28 February 2026, Rare Disease Day will once again be organised worldwide. We have created a new Rare Disease Day video.
Blog Katie Allen January 2026
An aspect of my CMTC that I don’t discuss very often is the hypermobility in my joints, especially on my impacted side. Both sides of my body have fairly mobile joints; however, my affected side is significantly more problematic. A notable visual difference in the mobility of my sides is that, while I can touch […]