Blog Katie Allen September 2026
September is always a busy time in my house. As someone who grew up in a house full of educators and then spent almost a decade in post-secondary education, I still feel a sense of new beginnings and the start of a new year, even though I left school long ago. So, with that topic […]
Blog Katie Allen August 2026
I wanted to touch on maybe my biggest challenge with my condition in this blog, and that’s that no matter how much you want to try new things, jump into the deep end, or give anything a go, there is often some careful planning that needs to happen before you can simply embrace some of […]
WCRSD 2026 – Paris
From 1–3 July 2026, the World Congress on Rare Skin Diseases (WCRSD) was held in Paris. The congress brought together more than 500 participants, with 71 speakers from 64 countries. Tari de Jong, Secretary of CMTC-OVM, and Lex van der Heijden, President of CMTC-OVM, attended the conference. Together with several other patient organisations from ERN […]
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 […]