Following Public Defender’s Mediation, Representative of Parents of Children with Achondroplasia Syndrome will be Involved in Development of Guidelines for Effective Management and Treatment of Disease
Following the mediation of the Public Defender’s Office, a working group will be created in the Ministry of Health, where a representative of parents of children with achondroplasia syndrome will be involved in the process of developing national guidelines, protocols and recommendations for the effective management and treatment of achondroplasia syndrome together with the relevant experts.
On March 29, 2023, the Public Defender’s representative presented a proposal on the involvement of parents in the discussion of the issue at the meeting of the coordination council working in the direction of access to services and medicines for beneficiaries with rare diseases.
Parents of children with achondroplasia syndrome contacted the Public Defender and asked for help in ensuring treatment for their children. From the very first days, the Public Defender’s Office has been in active communication with both parents and representatives of the Ministry of Health and will continue efforts to ensure the realization of children's right to health care, including mediation to solve the above-mentioned problems.