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. […]
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 […]
The digital dermatosis – Social media’s unintended impact on pre-adolescent skincare
Social media platforms, particularly TikTok, Instagram, and Snapchat, have become pervasive sources of information and influence, extending significantly into the realm of skincare and cosmetic procedures. While offering avenues for beauty exploration, their impact on pre-adolescent populations, characterized by developing skin and impressionable minds, presents increasing dermatological and psychosocial concerns. This review synthesizes recent findings […]
New: venous malformations and thrombosis
Dr. Maroeska te Loo gave a presentation in Berlin in February 2025 about venous malformations and the risk of thrombosis (clot that obstructs normal blood flow). More information