Children with rare diseases: ethical, social, psychological and medical issues
S. Ya. VolginaKazan State Medical UniversityЕ. А. НиколаеваVeltischev Research and Clinical Institute for Pediatrics of the Pirogov Russian National Research Medical UniversityА. А. СоколовI.I. Mechnikov North-Western State Medical UniversitySvetlana KopishinskaiaRimma GamirovaRussian Medical Academy of Continuing Professional EducationBarno T. KhalmatovaTashkent Medical Academy
Rossiyskiy Vestnik Perinatologii i Pediatrii (Russian Bulletin of Perinatology and Pediatrics)journal2019en
ABI
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.
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