EADV 2025 – Paris
The EADV conference was held in Paris from 17–20 September 2025. The total number of participants in Paris exceeded 20,000! In addition, it was also possible to participate online. On Monday, Lex travelled to Paris to take part in the Global Skin meeting on Tuesday. The position of Patient Organisations (POs) within the EADV has […]
Take part in the EURORDIS Rare Disease Barometer 2025
Take part in the Rare Disease Barometer, available in 25 languages. This annual survey is organised by EURORDIS – the European Organisation for Rare Diseases. https://www.sphinxonline.com/…/MH…/questionnaire.htm
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 […]
Naomi Rorive-van der Sar – Secretaris
I am Naomi Rorive-van der Sar, wife of Laurens and mother of three sons: Mason, Phaelan, and Otis. Otis was born in 2019 with red, blue, and purple spots on his skin. A few days after his birth, he was examined during the WEVAR consultation at Erasmus MC by Prof. Dr. Pasmans and her team. […]
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. […]