09. Living Loss
Here you find a small book with information about the grief that comes with losing a loved one Living Loss German Living Loss English Living Loss Dutch Living Loss Spanish Living Loss Italian Living Loss French
Rare disease day 2025
On February 28, 2025, during the National Rare Disease Day Event at Soestdijk Palace, the prestigious Rare Angel Awards were presented to Karin Veldman, Rianne Oostenbrink, and 3FM Serious Request. National Rare Disease Day Event The National Rare Disease Day Event takes place every last day of February as part of International Rare Disease Day. […]
VAC 2025 – Berlin
In 2023, the ‘international conference on Vascular Anomalies’ (VAC) was organized. In 2025, this conference was organized again and this year in Berlin from February 11 to 14. Around 170 physicians, professors, researchers and various patient organizations participated. The aim of the conference is to share the latest developments in research (basic, translational and clinical) […]
VASCERN Conference 2025 – Berlin
On February 10-11, 2025, the VASCA Winter Meeting brought together dedicated medical professionals, researchers, and patient representatives to share insights and collaborate on improving care for individuals with vascular anomalies. VASCERN is one of the European Reference Networks (ERNs) focused on rare multi system vascular diseases. As an organization, we are affiliated with both ERN […]
Julia Clabbers, MSc (Netherlands) – Medical advisor
Drs. Julia Clabbers works as a dermatologist at the Maastricht University Medical Center+ (MUMC+). Her areas of focus include genodermatoses (hereditary skin disorders), pediatric dermatology, and Mohs surgery. The Maastricht University Medical Center+ has been recognized by the Dutch Ministry of Health, Welfare and Sport (VWS) as a Center of Expertise for Genodermatoses. Within this […]
Blog Katie Allen February 2025
Happy Rare Disease Month. In honour of Rare Disease Day at the end of this month, I wanted to address something that can be super challenging at times while juggling your rare disease, getting involved in a community – any community. Many people with complex conditions can relate to the fact that sometimes between your […]
AIVA Conference 2025 – Austria
From March 7 to 8, 2025, the 15th Annual Conference of the Austrian Working Group for Interdisciplinary Treatment of Vascular Anomalies (AIVA) took place in St. Wolfgang am Wolfgangsee. This year, the event was held jointly with the 6th Annual Conference of DiGGefa (German Interdisciplinary Society for Vascular Anomalies e.V.). As the CMTC-OVM patient representative […]
CMTC-OVM Rare Disease Day 2025 video
Worldwide, Rare Disease Day is organized on the last day of February. Again this year, we have made a video in this context.
Blog Arianna Faro January 2025
There are a lot of times when I am extremely hard on myself. I have a tendency to compare myself to other people my age who have achieved wonders and will then proceed to mentally shame myself for not having done the same. For so long, I’ve created this narrative in my head that I […]
Skin at school
The implementation of the “Skin at School” program in the Netherlands is motivated by several factors. Skin complaints are often underestimated, which affects the quality of life of people with chronic conditions and contributes to significant bullying problems in children. In every classroom there are children who suffer from skin problems such as warts, athlete’s […]