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Lex's mission is: to improve the quality of life of people, esp. children, living with a rare disease. This is not limited to the patient but also covers his/her environment such as family and school. People with a rare disease not only have medical issues but can also suffer from psychological issues (for example selfimage and selftrust) and psychosocial issues (for example not being able to participate in gym resulting in not being part of the group). This requires a holistic approach.

As father of a daughter with the rare disease CMTC (website) Lex is active since 1994 in the rare diseases world and founded in 1997 a global non-profit patientorganisation and has the president role as well. This organisation has become a global expertise center. In Canada and the USA independent organisations have been founded with support of the Dutch global organisation.

CMTC is a rare bloodvessel disease with complications from cosmetical up to and including death. Unfortunately, as far as we know, at least 6 children died due to complications.

Lex has gathered more than 30 years knowledge and experience in international Information & Communication Technology (ICT) and has worked for instance as certified Senior Project Manager for IBM Global Services. During this career the mission of his life became visible. 
The combination of ICT and rare diseases is an unique combination and a very good combination at the same time!

Example CMTC

 

More information about Lex's activities in this role