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 […]
Blog Katie Allen January 2025
One of the scariest things that my condition has caused is medication uncertainty. I am currently going through this with a new medication, so I figured I would take this blog as an opportunity to discuss this experience. I am currently suffering from migraines, and we are unsure if they are CMTC-related or not, but […]
Mental Health & Wellbeing
The European Organization for Rare Diseases (Eurordis) has developed a wonderful website with a wealth of resources on mental health and well-being. We have also participated in this project. The relationship between physical and mental health is well-documented. An increase in the severity and complexity of a physical condition increases the risk of mental health […]
Policy vision on centers of expertise for rare diseases 2025
An expertise center for a rare disease is often a facility within a hospital that specializes in a specific rare condition. To gain recognition as an expertise center, an application can be submitted to the Ministry of Health, Welfare, and Sport (VWS). With this recognition, an institution can join a European Reference Network (ERN), allowing […]
