Representatives of the Ministry of Health Meets with Parents of Children with Achondroplasia

Representatives of the Ministry of Health met with the parents of children with achondroplasia. The aspects related to development of guidelines and protocols on management of rare diseases, including achondroplasia were discussed at the meeting.

The representatives of the Ministry presented Action Plan to the parents.

It was agreed, that the parents will get involved in the format of Rare Diseases Coordination Council. The next meeting of the Council will be convened on May 5 with participation of the parents. The meeting of the group working on protocol was scheduled.

Participants of the meeting reflected on the issue of granting children with achondroplasia with status of the persons with disabilities. According to Tamar Barkalaia, the procedures are ongoing and the children and their parents will have opportunity to use habilitation/rehabilitation program upon granting of the status.

During the meeting commitment to meet all health needs of the children was once again reconfirmed from the side of the Ministry.

The First Deputy Minister one more time presented information on the medicine received from international organizations to the parents. According to her, the communication with manufacturing company continues. The recommendation of the Rare Diseases Council, establishing of relevant management system are needed for safe introduction of the medicine and this will require certain timelines.  

The meeting was attended by the representatives of the Ministry and Public Defender Office.