No one sees them, but they do exist: How people suffering from rare disorders live?

The Belarusian Organization of People Suffering from Mucopolysaccharidosis and other Rare Genetic Diseases was created  in Belarus a year ago.  

The Organization unites the parents who have children suffering from rare diseases (45 diagnoses), renders them help and psychological assistance.
According to Tamara Matiyevich, chairwoman of the Organization, it is difficult to unite the mothers who have ill children, because they do not assert themselves, and the doctors never give the contact data of such people to the Organization.
For more information please see the Belarusian/ Russian version.
15 December 2011