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Lex is since the birth of his daughter in 1993 involved in rare diseases. He has a vast knowledge, experience and global network. Lex has an association in January 1997 started from scratch which is active worldwide and which is regarded as the best source with respect to the condition CMTC (and other vascular malformations). The website of CMTC-OVM is: CMTC-OVM website

He would like to use this knowledge, experience and his network to other organisations active in this field. Here are a few examples:

  1. Set up the Organization (policy plan, budget, code of conduct, complaints procedure, job descriptions, volunteer manual, procedure manual, templates for letters/presentations/minutes, etc.).
  2. Setting up information leaflets.
  3. Set up and build a website.
  4. Establish contacts with medical specialists.
  5. Contacts with national and international umbrella organisations.
  6. Setup social media.
  7. Support for grant request (if this is possible of course).
  8. Setting up annual report.
  9. Organisation of events such as conferences.


Thanks to this knowledge and experience a new organization can make a flying start and spent resources more efficiently and effectively!