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E-mail: vera_lipkovskaya@mail.ru

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Life Quality of Patients with Neurofibromatosis: Review of Foreign Investigations and Survey Data of Russian Patients


Vera V. Lipkovskaya

Ph.D. in Law, member of working group Union of Patients and Patient Organizations for Rare Diseases, Moscow, Russia

E-mail: vera_lipkovskaya@mail.ru

In the article the life quality concept of patients with neurofibromatosis was reviewed. The problem of formation of psychological support of these patients was described based on anonymous survey performed on patients in 2019. Findings can be used as an informational base for creation of similar psychological support programs and for the further developing of life quality concept in Russian science.

Key words: neurofibromatosis, schwannomatosis, life quality of patients with neurofibromatosis, psychological support, defectology (study of mental defects and physical handicaps).

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