On June 10-14 in Scientific center of pediatrics and children's surgery there passed the training cycle for regional rare diseases coordinators.

For the purpose of realization of actions of the Road map for introduction of new standards of diagnostics and treatment of rare diseases at children in the Republic of Kazakhstan for 2019-2020 on the basis of SCPCS there passed the training cycle for regional coordinators about questions of the organization of medical care for patients with rare diseases.

Issues of the regional coordinator role on rare diseases in implementation of the Road map, the Plan of measures on work of regional coordinators for 2019-2020 were discussed.    

Lecture materials on subjects are provided: "Metabolism diseases (classification, an etiology, a pathogeny, differential diagnostics and the basic principles of therapy)", "A bullous epidermolysis (classification, an etiology, a pathogeny, differential diagnostics and the basic principles of therapy), the main clinical manifestations of various forms of a bullous epidermolysis at children", "Primary immunodeficience (PID), definition, an etiopathogenesis, classification, dynamic observation of patients with PID, the principles of medical examination and prevention of secondary infectious complications", "A mucoviscidosis, an etiopathogenesis, classification, early diagnostics and differential diagnostics. There were main clinical manifestations of various forms of a mucoviscidosis. Verification of the diagnosis of a mucoviscidosis","Mucopolsugary, Etiopathogenesis, classification, diagnostics, early clinical manifestations. Route of the patient and algorithm of early diagnostics. Pathogenetic therapy and monitoring of ferment replacement therapy at a mucoviscidosis at children", "the Disease to Gosha: etiopathogenesis, classification, diagnostics, clinical manifestations. Route of the patient and algorithm of early diagnostics. Pathogenetic therapy and monitoring of fermentozamestitelny therapy at a disease to Gosha. Dynamic observation of patients with a disease of Gosha and principles of medical examination".

There are held practical occupation "Use of a flowing tsitometriya at diagnostics of PID. Interpretation of results of the immune status is normal both of pathology" and clinical analyses with the solution of situational tasks of patients with a mucoviscidosis, primary immunodeficience, a disease of Gosha, mukopolisugary. Certificates to 18 listeners of the cycle of training are issued.

Carrying out such training modules will allow improving quality of delivery of health care to children with rare (orphan) diseases.

Press service of SCPCS