Meeting of Rare Diseases Coordination Council

Meeting of Rare Diseases Coordination Council in connection with establishing of unified approaches and corresponding systems for management mechanisms of rare diseases including achondroplasia has been convened.

The members of the Council reflected on aspects of management of rare diseases, mechanisms for development of guidelines and protocols and involvement of international experts in this process.

As for achondroplasia treatment medicine, vosoritide, it was noted that due to insufficiency of evidences, developed countries of the world take this issue cautiously to maximally ensure patients safety.

The physicians noted, that the medicine is not included in the protocol of any country and that creates challenge in the process of development of Georgian protocol.

The members noted, that it is important, first of all to assess needs of children with achondroplasia and make a corresponding decision.  

The specialists underlined, that in some cases, there are exaggerated expectation with regard to the medicine and treatment of achondroplasia comorbidities is more important.

At the meeting, the Ministry once again clearly and explicitly confirmed its pledge to finance/organize diagnosis, treatment, rehabilitation and all needed procedures of comorbidities for the children with achondroplasia both in Georgia and abroad.