Blog Katie Allen April 2026
Finding community as a rare disease patient can sometimes be the most difficult part of the journey. I was so lucky to connect with CMTC-OVM when I was 19, and though I lost contact for a few years while I was at university, knowing there was an organization out there, with people like me, provided […]
Video interview with Prof. Dr. Suzanne Pasmans
Tijdens onze ledenconferentie in 2025 hebben wij weer een serie video interviews opgenomen. Interview with Prof. Dr. Suzanne Pasmans
Video interview with Dr. Jorie Versmissen
Tijdens onze ledenconferentie in 2025 hebben wij weer een serie video interviews opgenomen. Interview with Dr. Jorie Versmissen
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 […]