The ‘HME-MO Vereniging Nederland’ (MHE-MO association of The Netherlands) was founded in 2009, but has been active as a support group for patients since 1997. It is meant for MHE-MO patients and their relatives, such as parents and partners. Relevant information for everybody with an interest in MHE-MO can also be obtained. The goal of the Dutch MHE-MO association is:
– safeguarding the interests of the current and future MHE-MO patients and their relatives;
– bringing Dutch MHE-MO patients in touch with one another, through patient contact;
– creating an active collection of new information and distributing it to its members and people with interest.
Activities
Activities organised by the association are:
– a yearly ‘patient contact’ day with lectures and workshops;
– yearly regional meetings (HME-café) for patient contact;
– stimulating the participation in scientific research for MHE-MO;
– Medical Advisory Council;
– a Facebook group for adults, adolescents and children;
– a HME-MO Newsflash, published twice a year;
– a website with up-to-date information about MHE-MO;
– the publication of an information folder;
– the publication of an extensive information bulletin;
– participating in workgroups for people dealing with rare conditions and their medical treatment;
– maintaining contacts with MHE-MO patient support groups abroad.
The association also has an own email-address and a telephone information
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