Abstract
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 role in public awareness of rare diseases. It is of crucial importance to make treatment accessible, to provide qualified medical care, social support of families, to improve cooperation between research centers, medical institutions and patients.
Highlights
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 role in public awareness of rare diseases
Summary
Проблемы детей с редкими болезнями: этические, социальные, психологические и медицинские аспекты. The article describes ethical, social, psychological and medical problems in the families raising children with rare diseases. Что в 65% случаев орфанные заболевания имеют тяжелое инвалидизирующее течение, а пациенты нуждаются в длительном и интенсивном специализированном лечении [4].
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