Parents of Children Diagnosed with Achondroplasia End Round-the-Clock Protests
After 19 days of protests near the government administration building parents of children diagnosed with achondroplasia announced of the ending of the protests. The parents had been demanding that the government import and fund the drug ‘Vosoritide’ for their children, which is currently the only existing drug for the condition. The decision came after the parents were promised that they would be allowed to attend weekly meetings at the Ministry of Health and be involved in the work to secure the drug.
The Ministry of IDPs, Labor, Health and Social Affairs of Georgia, issued a statement yesterday that a meeting of the Coordination Council for Rare Diseases was held at the Ministry of Health dedicated to issues related to the development of guidelines and protocols for the management of achondroplasia.
According to the First Deputy Minister of Health Tamar Gabunia, the Ministry and the expert group are ready to provide the necessary protocol and guidelines for the management of achondroplasia in an accelerated timeframe, based on the best interests of the children.
According to the Deputy Minister, the Agency is in contact with the company that produces the drug “Vosoritide”. As noted at the Council meeting, the safe introduction of the drug requires recommendations from the Coordination Council for Rare Diseases and the implementation of an appropriate management system.
According to the statement, the Council meeting was attended by parents of children with achondroplasia syndrome, the representative of the World Health Organization in Georgia Silviu Domente, and representatives from the United Nations Children’s Fund, the Public Defender’s Office, the Ministry of Finance and others.
Also Read:
- 24/04/2023 – PM to Parents of Children with Achondroplasia: Do not Let Politicians Use You
- 21/04/2023 – Parents of Children with Achondroplasia Demand Meeting with Prime Minister
- 04/04/2023 – Despite Protests, Health Ministry Has No Plans to Import Drugs for Achondroplasia
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