Page 2 | CMTC-OVM

Family Weekend 2026

Looking Back on an Unforgettable Family Weekend in De Biesbosch – Saturday 23 & Sunday 24 May 2026 We had been looking forward to the annual CMTC-OVM family weekend, and it was a great success! Under bright sunny skies, young and old, Dutch- and German-speaking participants gathered in and around the beautiful Nationaal Park De […]

ISSVA 2026 – Philadelphia

The ISSVA (International Society for the Study of Vascular Anomalies) once again organized its international congress from May 19–22, 2026, in Philadelphia (USA). Approximately 700 participants attended in person, and, as in previous years, there was also an option to participate online. ISSVA is the leading global organization in the field of vascular malformations. The […]

Blog Arianna Faro June 2026

Never be ashamed of how you were born, no matter what anyone has to say. You are beautiful exactly as you are, and no one gets to decide your worth but you. This summer, I plan to wear my swimsuits, rock my scars, and live my life unapologetically. If someone chooses to make rude comments, […]

CORD Rare Diseases conference 2026

Our Patient Advocate Katie Allen has participated in this CORD conference on the 29th and 30st of April 2026 on behalf of our organisation. Day one of the conference started with a panel addressing questions about where we have come since the announcement of the rare disease drug strategy, and continued to look at the […]

Blog Katie Allen May 2026

Last month, I had the opportunity to attend the Spring Canadian Organization for Rare Diseases (CORD) Conference online. This is always a great opportunity to catch up with other rare disease organizations from across Canada and to see how political and economic conditions are changing access to care for rare disease patients in all provinces. […]

Family Day 2026: registration open

The registration for our international Family Day on the 4th of July in the Efteling is open! Register fast!

Approval alpelisib by EMA

EMA has recommended granting a conditional marketing authorisation in the European Union (EU) for Vijoice to treat adults and children aged 2 years and older with severe or life-threatening PIK3CA-related overgrowth spectrum (PROS) disorders. Read more

Blog Arianna Faro May 2026

There was a time I would’ve never posted photos like this. I spent years hiding my birthmark—covering it, avoiding it, wishing it looked different. Years ago, I made a decision: I wasn’t going to live my life based on what other people might think. I stopped letting outside opinions define how I see myself. This […]

Prof. Dr. Suzanne Pasmans is running a half marathon again

One of our advisors, Suzanne Pasmans, has once again made a remarkable contribution to children with extremely rare skin conditions. On Saturday, April 26, 2026, she ran the half marathon in Padua to raise funds for a project supported by the Under Your Skin Foundation. What an incredible achievement and motivation! We are proud to […]