Alexandra Haan – Treasurer
My name is Alexandra Haan and I am a single mother of two. My eldest has a venous-lymphatic malformation around his left eye, temple, nose, forehead, and in the skull, and my youngest has a developmental language disorder. We live in Dordrecht and have travelled a lot (to New York, Berlin, Boston) due to my […]
Laurens Rorive – Communication
My name is Laurens Rorive and I am Otis’ father. Otis was born in 2019 with marks covering his body, and so began our medical search. Fortunately, four days after his birth, we ended up at the Sofia Children’s Hospital for the WEVAR (WErkgroep VAatafwijkingen Rotterdam – Vascular Malformations Working Group Rotterdam) consultation hour. Due […]
Lex van der Heijden – President
Lex is the father of a young lady with CMTC (she’s the reason for this organization), founder (1997) and chairman of the global organization. In the past he was ICT Project Manager and has worked for example for IBM Global Services. In 2012 he switched to devote his time and energy full-time (unpaid) to his […]
Anja Fluijt – Secretary
My name is Anja Fluijt and I am the mother of Niels born in 2004 with many spots throughout the body. By an attending paediatrician, we received a referral to the Sofia Children’s Hospital in Rotterdam within 3 months, where Dr. Oranje gave the diagnosis CMTC. For so long we are also a member of […]
