Registration global members conference on location and online
On October 30, 2021 we will again organize our worldwide ‘real’ members’ conference in the Netherlands! This will be a ‘hybrid’ conference as we offer our members from all over the world to follow our conference ‘online’ as well. The conference will start with a welcome on October 29 and will last all day on […]
Webinar 22 May 2021 – After the diagnosis
We organized this public webinar on May 22, 2021 with the subject ‘after the diagnosis’ by Johannes Verheijden. Johannes is also the author of: After the diagnosis *Johannes Verheijden is Coordinator of Network Integrated Child Care at the Knowledge Centre for Child Palliative Care. After the diagnosis How do you deal with the consequences of […]
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
