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 passion/mission: improve the lives of people, especially children, with rare diseases.
A number of other roles:
- Past: ArchitecturBoard Healthcare Netherlands (Ministry of Health, Welfare & Sport).
- Steering Committee Global Skin Foundation (Canada).
- RareDerm Committee Global Skin Foundation (Canada).
- European Reference Network Skin.
- European Reference Network VASCERN.
- European Reference Network Psychology (transversal) Workgroup.
- European Patient Advocacy Group VASCA Workgroup.
- European Advocacy Group Nederland (VSOP).
- European Patient Advocacy Group Patient Partnership.
- European Academy of Dermatology and Venereology Task Force Patient Advocacy.
Royal award Officer in the Order of Oranje-Nassau.
