The Ministry of Health of RK, specialists of Scientific center of pediatrics and children's surgery, the Kazakh scientific center of dermatology and infectious diseases, University children's clinic "Aksay", department of stomatology of the Kazakh national medical university of S.D. Asfendiyarov took part in work of the meeting; representatives of public organizations: Public fund "Children butterfly" Kazakhstan, OF "Mercy Volunteer Society", Association of patients of rare diseases and also dermatologists, stomatologists, orthopedists.

There were all regions – deputy heads of managements of health care of regions, regional rare diseases coordinators, specialists of KF UMC National scientific center of motherhood and the childhood participated in the selector mode.

The main report was made by the head of Scientific center of pediatrics and children's surgery Risa Boranbaeva. She told about today's condition of health care delivery to children with a bullous epidermolysis in RK and shared experience of complex treatment of these patients in Russia.

In total in RK 56 children with a congenital bullous epidermolysis are registered, 50% of them are made by children from 5 to 15 years; the greatest number of children is diagnosed in Almaty region, Nursultan city, Karaganda, Aktyubinsk regions.

As a result of discussion of problematic issues on diagnostics and treatment of bullous epidermolysis in Kazakhstan the joint decision on creation of multidisciplinary team of specialists on republican level and higher education institutions was made: dermatologists, pediatricians, stomatologists, orthopedists, children's surgeons, gastroenterologists with their further training in foreign clinics or by carrying out in RK of master classes.

The decision to develop the Standard of health care delivery to children with rare diseases was made. Also in each region they decided to make the plan of measures on improvement of medical care to children with the bullous epidermolysis and to build the effective system of their dynamic observation.

To take into consideration experience of assistance to "children butterflies" in Russia with further interaction and cooperation for the solution of the main problematic issues: on development of educational programs and training of doctors, creations of the uniform Kazakhstan register of patients with a gene dermatosis and the organizations of system medical care to children with complications of bullous epidermolysis.