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. […]
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 […]
