Eurordis 2026 – Prague
The 13th European Conference on Rare Diseases & Orphan Products (ECRD) took place on 3 and 4 June 2026 in Prague and online, under the theme: “Rare Diseases in a Changing & Competitive Europe: Shaping Policies to Address the Unmet Needs of People Living with Rare Diseases.” ECRD is the largest patient-led policy-making event on […]
18. Do’s and don’ts for effective patient communication
Within the VASCERN Psychology Working Group, we have developed a practical brochure for healthcare professionals, offering guidance on what they should and should not do to communicate effectively with patients. At present, the brochure is available in English only.
Eurordis Summer School 2026 – Parijs
The European organisation for rare diseases organised the Summer School on vascular malformations in Paris from 14 to 19 September 2026. Our organisation is part of the European network for vascular malformations (European Reference Networks). Within this network, we are actively involved in the VASCA Working Group. This year, Lex van der Heijden represented the […]
Blog Arianna Faro October 2026
There is no shame in showing the parts of yourself that look different. Scars. Birthmarks. Surgical marks. Abnormalities. Swelling. Skin conditions. Anything that makes your body different from what society considers “normal.” None of those things make you less beautiful. And none of them are something you need to hide. For a long time, I […]
Blog Arianna Faro September 2026
Hey guys, I’m still here ♡ during the last couple of weeks in August, I started having new and unsual pain in my inner KT thigh. It was constant, and so painful at times that it was hard to think about or focus on anything else. I did not have any systemic symptoms or redness […]
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 […]
17. Reserved
This location in reserved for later for multiple languages of the clinician assistents about vasculare malformations. At this very moment only the Dutch version is available.
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 […]