Children with rare diseases: ethical, social, psychological and medical issues-Reference-Cited by-同舟云学术

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

Published:2019-11-16 Issue:5 Volume:64 Page:149-154
ISSN:2500-2228
Container-title:Rossiyskiy Vestnik Perinatologii i Pediatrii (Russian Bulletin of Perinatology and Pediatrics)
language:
Short-container-title:Ross. vestn. perinatol. pediatr.

Author:

Volgina S. Ya.¹^ORCID,Nikolaeva E. A.²^ORCID,Sokolov A. A.³^ORCID,Kopishinskaia S. V.⁴^ORCID,Gamirova R. G.⁵^ORCID,Khalmatova B. T.⁶^ORCID

Affiliation:

1. Kazan State Medical University

2. Veltischev Research and Clinical Institute for Pediatrics of the Pirogov Russian National Research Medical University

3. I.I. Mechnikov North-Western State Medical University

4. Volga Research Medical University

5. Russian Medical Academy of Continuing Professional Education

6. Tashkent Medical Academy

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.

Publisher

The National Academy of Pediatric Science and Innovation

Subject

Pediatrics, Perinatology, and Child Health

Reference33 articles.

1. Rare Diseases Act of 2002. Public Law 2002; 6107–6280.

2. Rare diseases: shaping a future with no-one left behind. 2017; 24. https://www.ifpma.org/wpcontent/uploads/2017/02/IFPMA_Rare_Diseases_Brochure_28Feb2017_FINAL.pdf

3. Федеральный закон «Об основах охраны здоровья граждан в Российской Федерации» от 21.11.2011 № 323-ФЗ. https://base.garant.ru/ [Federal Law « On the Principles of the Protection of Citizens’ Health in the Russian Federation » of 21.11.2011 No. 323-FL (in Russ.)]

4. French National Plan for Rare Diseases 2005–2008. «Ensuring equity in the access to diagnosis, treatment and provision of care». 2004; 36. http://www.europlanproject.eu/DocumentationAttachment/NATIONALPLANS_FR2_French_National_Plan.pdf

5. EURORDIS. France – EUROPLAN National Conference Final Report. 2018.http://www.eurordis.org/sites/default/files/flags/finalreport-france.pdf (accessed July 30, 2018)

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