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 so helpful, so we contacted with CMTC-OVM organisation in Netherlands, Lex offered us his knowledge and his experience about CMTC, and that helped us to proceed with our lives.
Being patient advocacy in Greece I hope that it will help other parents with similar affairs to get in touch with the CMTC-OVM organisation, share their experience, and also they may help other parents with their turn so all these rare diseases will be better known and be treated with more knowledge.
