Open AccessChildren with rare diseases: ethical, social, psychological and medical issues
Author(s) -
S. Ya. Volgina,
Е. А. Николаева,
А. А. Соколов,
Svetlana Kopishinskaia,
Rimma Gamirova,
Barno Turdikhodjaevna Khalmatova
Publication year - 2019
Publication title -
rossijskij vestnik perinatologii i pediatrii
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.139
H-Index - 4
eISSN - 2500-2228
pISSN - 1027-4065
DOI - 10.21508/1027-4065-2019-64-5-149-154
Subject(s) - medical care , social isolation , isolation (microbiology) , raising (metalworking) , rare disease , disease , ethical issues , medicine , psychology , psychiatry , family medicine , engineering ethics , pathology , geometry , mathematics , engineering , microbiology and biotechnology , biology
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.