World Congress Pediatric Dermatology 2025
This was our first time attending the World Congress of Pediatric Dermatology. It was organized in Buenos Aires from April 7 to April 11, 2025. The number of participants was around 2,500 doctors from all over the world. During this congress, four of our advisors gave presentations, and doctors from many countries whom we know […]
VAC Conference 2025 – Berlin
In 2023, the ‘International Conference on Vascular Anomalies’ (VAC) was organized. In 2025, this conference was held again, this time 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) to […]
Family weekend 2025: information and registration
You can participate again in our international Family Weekend in the Netherlands! Information and registration
Prof. Dr. Barend Mees (Netherlands) – Medical advisor
Prof. Dr. Barend Mees, acting head of the Department of Vascular Surgery at MUMC+ (Maastricht, the Netherlands), is an expert in vascular surgery with many years of experience in treating complex vascular diseases. Prof. Dr. Mees studied medicine at the LUMC in Leiden and completed his training as a general and vascular surgeon at Erasmus […]
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 […]