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
Blog Katie Allen June 2025
Taking a break this month from the “How do I explain…” series to share an incredibly poignant experience I had at my dermatologist’s office this month. I was waiting in the secondary waiting room and was surprised and honestly a little annoyed that the appointment seemed to be running late, this doctor is unbelievably punctual, […]
CMTC-OVM Activities Team (CAT)
CMTC-OVM Activities Team (CAT) We recently established the CMTC-OVM Activities Team.We are involved in so many events and activities that it has become necessary to form a dedicated team. The number of volunteers is growing, with people joining us from both inside and outside our organization. This allows us to divide the workload into smaller, […]
World Health Assembly Resolution on Skin Diseases
Addressing the Need For Global Public Health Priority of Skin Diseases Côte d’ Ivoire, together with Nigeria, Togo, Micronesia, China, Egypt and Colombia is leading an initiative to place skin diseases firmly on the global public health agenda and have proposed a World Health Assembly Resolution on “Skin diseases as a global public health priority ”. […]
Blog Katie Allen May 2025
One of the most common questions anyone ever asks 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, […]