Sofie (Denmark)
Hi! My name is Sofie and I’m a 18 year old girl from Denmark. I was covered with red blemishes when I was born. My mother and father couldn’t see them and the doctors had no idea what they were. That really scared my parents. An old doctor told my parents that it was called […]
Rare diseases day Netherlands 2021
We have been actively participating in the global rare diseases day for years. Unfortunately, in 2021, due to the COVID-19 virus a ‘real’ day can’t be organised, but the rare diseases day will become a virtual day in 2021. Rare Disease Day takes place on the last day of February each year. The main objective of Rare […]
Niklas Rotter (Austria)
When Niklas was born in February 2016, he had large red/purple spots on his right foot, leg, buttocks and lower back. The dermatologist told us the next day that he thought he had seen something like this in a book and that he thought it could be CMTC. But he also immediately admitted that he […]
EuropaDerm initiative
We are part of the Global Skin Foundation (based in Canada) and they have started the European EuropaDERM initiative. We participated in the first (online) ‘Envisioning EuropaDERM event’ that was organized on January 29, 2021. For two hours we discussed with other (international) leaders of European patient organizations a common path for the European dermatological […]
