Dutch HME-MO association

The HME-MO Vereniging Nederland (HME-MO Association The Netherlands) is founded 2009, but was already active as a mutual support group since 1997. It is set up for MHE-MO patients and those directly concerned with somebody with MHE-MO, such as parents or partners. All others with interest in MHE-MO can also obtain relevant information. The goal of the HME-MO Vereniging Nederland is:

  • safeguarding interests of the present-day and future MHE-MO patients and their relatives;
  • bringing MHE-MO patients in the Netherlands in touch with one another, through mutual support contact;
  • active collection of new information and distribution to its members.

 
Activities
Activities done by the association are:

  • yearly mutual support contact day with lecturers and workshops;
  • yearly regional meetings (HME-café) for mutual support contact;
  • stimulation of and participation in scientific research in the area of MHE-MO;
  • Medical Advisory Council;
  • e-mail group;
  • Facebookgroups group for adults, young people and children;
  • HME-MO Newsflash published twice a year;
  • a website with up to date information about MHE-MO;
  • own e-mail address and telephone information desk;
  • publication of an information folder;
  • publication of an extensive information bulletin;
  • participation in working groups dealing with rare conditions and medical treatment for these condition;
  • maintaining contacts with MHE-MO mutual support groups abroad.
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