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 […]
Video interview with Annekee van Kranenburg
Tijdens onze ledenconferentie in 2025 hebben wij weer een serie video interviews opgenomen. Interview with Annekee van Kranenburg
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. […]