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 […]
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 […]