Children with rare diseases: ethical, social, psychological and medical issues

The article describes ethical, social, psychological and medical problems in the families raising children with rare diseases. It is quite difficult to diagnose a rare disease. It leads to financial deprivation of the family, social isolation and marginalization. Patient organizations play a large r...

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Main Authors: S. Ya. Volgina, E. A. Nikolaeva, A. A. Sokolov, S. V. Kopishinskaia, R. G. Gamirova, B. T. Khalmatova
Formato: Artigo
Idioma:Russo
Publicado em: Ltd. “The National Academy of Pediatric Science and Innovation” 2019-11-01
Colecção:Rossijskij Vestnik Perinatologii i Pediatrii
Assuntos:
children
rare diseases
ethical
social
psychological and medical aspects
Acesso em linha:https://www.ped-perinatology.ru/jour/article/view/983
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