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Circle of good Foundation: are all diseases rare?
- Authors: Shukan E.Y.1, Komarov I.A.1, Aleksandrova O.Y.1, Smirnova N.S.2
- Affiliations:
- N. A. Semashko National Research Institute of Public Health, 105064, Moscow, Russian Federation
- PROVE Ltd., Saint-Petersburg, Russian Federation
- Issue: No 1 (2026)
- Pages: 97-101
- Section: Articles
- URL: https://bulleten-nriph.ru/journal/article/view/3128
- DOI: https://doi.org/10.69541/NRIPH.2026.01.015
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Abstract
In accordance with Decree No. 16 of the President of the Russian Federation dated January 5, 2021, the Circle of Good Foundation (hereinafter referred to as the Foundation) was established to support children with severe life-threatening and chronic diseases, including rare (orphan) diseases. The Foundation's goal is to implement an additional mechanism for organizing and financially supporting medical care for children, providing them with medications and medical devices, including those not registered in the Russian Federation, as well as technical rehabilitation equipment. This article analyzes the diseases for which the organization of medical care is carried out for children under the care of the Circle of Good Foundation, identifies the diseases that are considered to be rare and the discrepancies between the List of Rare (Orphan) Diseases of the Ministry of Health and the List of Severe Life-Threatening and Chronic Diseases Including Rare (Orphan) Diseases of the Foundation.
About the authors
Elena Yurievna Shukan
N. A. Semashko National Research Institute of Public Health, 105064, Moscow, Russian Federation
Email: eushukan@gmail.com
Ilya Aleksandrovich Komarov
Email: iliya_komarov@mail.ru
Oxana Yurievna Aleksandrova
N. A. Semashko National Research Institute of Public Health, 105064, Moscow, Russian Federation
Email: aou18@mail.ru
Natalia Sergeevna Smirnova
PROVE Ltd., Saint-Petersburg, Russian Federation
Email: genetic.natalic@mail.ru
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