Expansion of our translation/interpreter team
We have volunteers in several countries who help us with translation work. In the Netherlands, for example, we work together with Hogeschool Zuyd. Zuyd Vertalingen is a translation agency run by fourth-year students at the Translation Academy. Our team currently consists of 5 full-time employees who are supported by six French-speaking exchange students. While we […]
Poland – Dominika Blacharska
My name is Dominika! I’m 24 years old. I live in Szczecin in Poland and I’m a student. I have a bachelor’s degree in management, with a specialism in public organisations and public relations. I’m currently in the last year of my master’s study in administration. I’m engaged to Sebastian. I have HAE (hereditary angioedema), […]
Another new project: teachers leaflet!
We are happy to announce that we have once again found financing for a project! Novartis will be our sponsor. We will develop two leaflets: one for primary school teachers and one for secondary school teachers, both in five languages (German, English, French, Dutch and Spanish). With this leaflet, we want to inform teachers about […]
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 […]
Webinar 16 January 2021 – Vascular malformations and overgrowth
We organized our first webinar on January 16, 2021 with the topic ‘vascular malformations and overgrowth’ by Dr. Christianne van Nieuwenhoven. Treatment of vascular malformations and overgrowth Christianne van Nieuwenhoven is a plastic surgeon at the Erasmus Medical Centre in Rotterdam. She is particularly specialised in hand surgery in children. This way she deals with […]
Collaboration with ECH
We have started a new partnership with the European Connected Health Alliance (ECH). The goal of ECH is to connect organizations and individuals in the field of digital health. Currently, more than 750 organizations are affiliated with ECH from 78 countries and can reach 4.4 billion people. More information
Vaccination advice COVID-19
We are member of European Reference Networks (ERNs) and they offer a unique opportunity for physicians to work cross-border in healthcare in Europe. ERNs create a clear governance structure for knowledge exchange and care coordination across the European Union to improve access to diagnosis and treatment, as well as the provision of high-quality healthcare for […]