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Imperfect osteogenesis (imperfect bone formation) or “crystal person disease” is a rare genetic disease characterized by increased fragility of bones. In the Republic of Kazakhstan, there are only 80 children with this diagnosis.

At the initiative of the Ministry of Health and the Scientific Center of Pediatrics and Children’s Surgery, questions of providing medical care to children with imperfect osteogenesis were discussed. The meeting was attended by all the Deputy Heads of the Regional Health Departments, orthopedic specialists, republican medical organizations, NGOs included in the Public Council under the SCPCS for the implementation of the roadmap for rare diseases, and parents of children with osteogenesis imperfecta.

They discussed all the problematic issues that have recently been raised by parents of sick children: providing medicines, age restrictions in the instructions for the main drug, the need for a single competent Center for systemic treatment of this disease, training, etc.
Following the results of this meeting, an action plan will be developed to address systemic issues, as well as specific proposals will be presented in the Ministry of Health of the Republic of Kazakhstan for the diagnosis and treatment of imperfect osteogenesis in children in the Republic of Kazakhstan.