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
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 […]
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. […]
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
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 ”. […]
Rare disease day 2025
On February 28, 2025, during the National Rare Disease Day Event at Soestdijk Palace, the prestigious Rare Angel Awards were presented to Karin Veldman, Rianne Oostenbrink, and 3FM Serious Request. National Rare Disease Day Event The National Rare Disease Day Event takes place every last day of February as part of International Rare Disease Day. […]
CMTC-OVM Rare Disease Day 2025 video
Worldwide, Rare Disease Day is organized on the last day of February. Again this year, we have made a video in this context.