Blog Katie Allen July 2026
It’s always fascinating how care can come in cycles. I have spent years hitting my head against the wall when it comes to trying to solve the chronic infections I suffer from; none of my doctors knew what to do or how to proceed. However, I finally managed to convince my GP to send me […]
Blog Arianna Faro August 2026
I share my story because somewhere, someone is hiding the very thing that helps makes them beautiful.. for the first half of my life, I did just that: I hid behind long pants and dresses, and was so incredibly scared to expose what was laying beneath them. Right as I began to enter adulthood, I […]
Video Family Weekend 2026
We’re excited to share the official video of our 2026 Family Weekend! 🎉🎥 What a wonderful weekend it was—filled with laughter, meaningful connections, shared experiences, and unforgettable moments. A huge thank you to everyone who joined us and helped make this event so special. We hope you enjoy reliving these memories with us! ❤️ #FamilyWeekend2026 […]
Eddy van Boven
On 29 July 2026, Eddy van Boven passed away peacefully after a short illness at the age of 64. Her father, Jos, and her mother, Ton (obituary for Ton), both passed away some time ago. Their family was among the very first members of our organisation, and Jos served as our Treasurer for many years. […]
Family Day 2026: Efteling
On 4 July 2026, it was time once again for our annual Family Day! This year, we once again chose Efteling, mainly because it offers attractions and activities for visitors of all ages. We deliberately organise our Family Day in July, when the park is open until 10:00 p.m., allowing families to make the most […]
Rare disease barometer
Improve Our Mental Health! June 2026 30 million people live with a rare disease in Europe. Alongside their families, they face physical and practical challenges but also a significant psychological burden. Recognising the rare disease community as a vulnerable population in mental health strategies is essential to deliver the care they need. This Rare Barometer […]
Blog Katie Allen June 2026
One reality of living with any chronic condition is that no matter how much you want to change the world and the future for people with your condition, you only have so much energy. There is a temptation to keep pushing through, that your goals are closer than they appear; however, if you push your […]
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, […]