Video interview with Matt Bolz-Johnson
During our members’ conference in 2025, we recorded another series of video interviews. Interview with Matt Bolz-Johnson (formerly of EURORDIS).
Current and emerging pharmacotherapies for the treatment of vascular malformations
New developments in medications for vascular malformations are described in an article. We have created a summary of this. Several of our advisors are authors of this article. Read more
Blog Katie Allen March 2026
Last month, I shared the frustrating reality of advocating for yourself in the healthcare system. It is always important to acknowledge these challenges to work towards building a better future, but it is equally important to celebrate the successes. Since I recently had one of these whiplash experiences, I wanted to share the good news […]
Rare Disease Day 2026
On Rare Diseases Day, February 28, 2026, patient organizations, healthcare professionals, and policymakers came together for an inspiring and educational day. The conference focused on collaboration, looking ahead, and above all, learning from one another. New energy at VSOP The day immediately felt like a fresh start. VSOP is clearly embarking on a new chapter. […]
Program and registration Family Weekend 2026
The program of our Family Weekend 2026 is ready and the registration is open! Alexandra and Naomi have created a challenging and varied program, so sign up now. Don’t wait too long! Registration closes on May 17! Program and registration
New members and financial administration system
As of 2026, we have implemented a new membership and financial administration system called Banster. This system offers a wide range of practical functionality for both our members and our organization. The main features are: Members/donors can view and update their own information (such as their address). They can also check the status of their […]
AIVA Conference 2026 – Austria
On March 6 and 7, 2026, the 16th Annual Conference of the Austrian Working Group for Interdisciplinary Treatment of Vascular Anomalies (AIVA) took place in St. Wolfgang am Wolfgangsee. A symposium held at one of Austria’s most beautiful locations. This naturally creates a blend of inspiration and focus—exactly what is needed to delve deeply into […]
Translation team Hogeschool Zuyd 2026
Also this year, the team of Hogeschool Zuyd is once again committed to supporting our organization. Hello! We are team Zuyd Vertalingen, a translation agency run by students in the last year of the Maastricht School of Translation and Interpreting (Vertaalacademie). Every year, from February to June, a new team is there to help you […]
Blog Katie Allen February 2026
I want to start this blog by saying happy early Rare Disease Day. To celebrate this rare disease journey we are on, I want to focus on one aspect of rare disease care that I feel sometimes doesn’t get addressed adequately, which is the emotional toll that simply making appointments can take. The long wait […]
Naomi Rorive – van der Sar- CMTC-OVM Activities Team (CAT)
My name is Naomi Rorive–van der Sar. I am the wife of Laurens and the mother of three sons. Our youngest son, Otis, was born with CMTC. In addition to being a mother, I work as a language coach for non-native speakers and as a homework tutor. Together with, among others, Alexandra, I help organize […]