Greece – Anestis Giannoudovardis
My name is Anestis Giannoudovardis, I live and work in Athens Greece. I was born in 1973, and I‘m an accountant. I have three children, Alexandros (2004), Filippos (2012) and Despoina (2014). My little daughter Despoina, when she was born she diagnosed with CMTC. The help from my country about this rare disease was not […]
Japan – Ami
Hello, my name is Ami from Japan. I currently work for a world leading Executive Training company as a trainer where we help people to increase their confidence, communication, human relationships, leadership and stress management skills. I was born with CMTC and from a small age this effected my confidence, since due to the rarity […]
Collaboration Greek organisation rare diseases & CMTC-OVM
We have started a collaboration with the Greek organization for people with rare diseases. It is high time to really start working together with the aim to help patients with CMTC and other blood vessel diseases and their families where possible. More information
Royal decoration for Lex van der Heijden
The day before King’s Day in the Netherlands, it is the tradition to reward volunteers with a royal decoration. To his surprise, our chairman, Lex van der Heijden, was appointed Officer in the Order of Oranje-Nassau. The Order of Oranje-Nassau exists since April 4, 1892. Persons appointed as Officers often have a national or even […]
First edition VASCA Magazine
The purpose of this brand new publication is to inform patients, caregivers and healthcare professionals about current developments in diagnosis, treatment and research on vascular malformations. More information
USA – Amanda Starkey
I am an Industrial/Organizational Psychologist and mother of a young child with CMTC from Michigan, USA. I work as a technical assistance liaison for a mental health advocacy program called SOAR (SSI/SSDI Outreach Access and Recovery). We provide technical support and training for mental health providers, homeless serving agencies, family members, and clients looking for […]
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 […]