Matsatso Khachapuridze from Georgia is the founder of a non-governmental organization called “Wolfram Syndrome – Georgia”. “Wolfram Syndrome – Georgia” was founded on November 29th, 2017. Matsatso decided to establish this organization because she has Wolfram Syndrome (WS). In Georgia, WS is not on the list of rare genetic diseases and there is no statistical data for this disease. The only data that is available is in the “Diabetic Child Protection Association”, where there are 20 people with WS (official data).
Matsatso met with the chairman of the Committee on Health and Social Issues of the Parliament of Georgia. She was asked why she needed WS to be on the list of rare genetic diseases since people with WS already receive free medication for diabetes insipidus, diabetes mellitus, and desmopressin. She explained to the chairman that there are other things that are desperately needed for these patients due to the many manifestations of this disease. For example, hearing devices.
There are no medical institutions or special programs in Georgia where patients with WS could get a consultation to discuss all the aspects and issues of WS. Wolfram Syndrome-Georgia is hoping to change this. For more information please contact;