Blog Katie Allen September 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; […]
Impression members’ conference 2024
An impression of our members’ conference 2024.
New European project NARRATIVE
European Research Project NARRATIVE Launched The new project NARRATIVE of the VASCA Working Group (of which CMTC-OVM is a member) within the European Reference Network VASCERN aims to gain more knowledge about the course and treatment of rare vascular anomalies. Vascular anomalies are rare and sometimes complex and difficult to treat. NARRATIVE is establishing a […]
Blog Arianna Faro August 2025
Hi guys ♡ I hope that everyone is doing well ♡ These are a couple of pictures I took while visiting my Mom at work the other night. I was feeling super low inside, and did not really not know what to do with myself. I decided to put on some makeup and go do […]
Blog Katie Allen August 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; however, […]
Family Day 2025: Efteling
On July 5, 2025, it was time once again for our Family Day! This year, we chose the Efteling once more, primarily because the park offers something for virtually all age groups. We deliberately select the month of July because the Efteling is open until 10 p.m. — and several families definitely made use of […]
New medication development: RLY-2608
One of the programs of the company Relay is focused on PIK3CA-driven vascular malformations, including PIK3CA Related Overgrowth Spectrum, known as PROS, and PIK3CA-driven lymphatic malformations. Examples are eg. Klippel-Trenaunay, CLOVES, FAVA, MCAP and many more. The PIK3CA gene creates a protein, called PI3Kα. PI3Kα is involved in your body’s natural cell growth and metabolism. […]
Blog Arianna Faro July 2025
My name is Arianna Faro. For those who may not have had the chance to read any of my prior writings, I am a 34-year-old woman living with Klippel-Trenaunay syndrome. Throughout the course of my lifetime thus far, I have endured over 100 hospitalizations due to various operations, infections, and blood clots (all of which […]
Blog Katie Allen July 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; however, […]
Family Weekend 2025
On Saturday and Sunday, May 24–25, 2025, we organized our second International Family Weekend. A total of approximately 40 people attended from Germany, the Netherlands, and Austria. Unfortunately, some participants were only able to stay for Saturday or had to leave early on Sunday. This year, we arranged activities at various locations, starting at 11:00 […]