Deputy Minister of Health, Tamar Gabunia, states that the Ministry is ready to provide the necessary protocol and guidelines for the management of achondroplasia in an accelerated time frame, based on the best interests of the children.
According to her, the representatives of the “Little People from Georgia” organization will have the opportunity to participate in the work of the coordination council working on the issues of rare diseases, and the multidisciplinary group working on the issues of achondroplasia.
One of the demands of parents of children diagnosed with achondroplasia is involvement in working groups.
“According to the statements of the Prime Minister and the Minister of Health, with the involvement of specialists in the field, active work is underway in the direction of proactive planning and negotiations of various measures included in the achondroplasia protocol. At the same time, the agency continues to communicate with the company that produces the medicine “Vosoritide” so that after the development of the protocol and management mechanisms, all the necessary procedures for children can be provided,” said Tamar Gabunia.
The parents have been holding protests for several months, demanding the import of necessary medicine for their children in Georgia and funding from the state.