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<article xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance" article-type="research-article" dtd-version="1.1d1" xml:lang="en"><front><journal-meta><journal-id journal-id-type="publisher">Bulletin of Semashko National Research Institute of Public Health</journal-id><journal-title-group><journal-title>Bulletin of Semashko National Research Institute of Public Health</journal-title></journal-title-group><issn publication-format="print">2415-8410</issn><issn publication-format="electronic">2415-8429</issn><publisher><publisher-name>FSSBI «N.A. Semashko National Research Institute of Public Health»</publisher-name></publisher></journal-meta><article-meta><article-id pub-id-type="publisher-id">1424</article-id><article-categories><subj-group subj-group-type="heading"><subject>Научная статья</subject></subj-group></article-categories><title-group><article-title>MODERN PROBLEMS OF ORPHAN DISEASES</article-title></title-group><contrib-group><contrib contrib-type="author"><name name-style="western"><surname>Chicherin</surname><given-names>L. P</given-names></name><bio></bio><email>leo2506@gmail.com</email><xref ref-type="aff" rid="aff-1"/></contrib><contrib contrib-type="author"><name name-style="western"><surname>Prokofyeva</surname><given-names>Y. A</given-names></name><bio></bio><email>-</email><xref ref-type="aff" rid="aff-2"/></contrib></contrib-group><aff id="aff-1">FSSBI «N.A. Semashko National Research Institute of Public Health»</aff><aff id="aff-2">Pirogov Russian National Research Medical University (RNRMU)</aff><pub-date date-type="epub" iso-8601-date="2019-12-15" publication-format="electronic"><day>15</day><month>12</month><year>2019</year></pub-date><issue>1</issue><fpage>118</fpage><lpage>124</lpage><history><pub-date date-type="received" iso-8601-date="2022-04-08"><day>08</day><month>04</month><year>2022</year></pub-date></history><permissions><copyright-statement>Copyright © 2019,</copyright-statement><copyright-year>2019</copyright-year></permissions><abstract>In article the first attempt of consideration of legal documentary base at the federal level on problems of rare/orphan diseases for the purpose of its generalization and systematization as essential basis of early detection of pathology, optimization of interdepartmental medico-social security of the contingent is made.</abstract><kwd-group xml:lang="en"><kwd>orphan diseases</kwd><kwd>legislation</kwd><kwd>bylaws</kwd><kwd>interdepartmental approach</kwd><kwd>medico-social help</kwd></kwd-group><kwd-group xml:lang="ru"><kwd>орфанные заболевания</kwd><kwd>законодательство</kwd><kwd>подзаконные акты</kwd><kwd>межведомственный подход</kwd><kwd>медико-социальная помощь</kwd></kwd-group></article-meta></front><body></body><back><ref-list><ref id="B1"><label>1.</label><mixed-citation>Объединим усилия в борьбе с редкими болезнями // Бюллетень ВОЗ.- Выпуск 90, № 6, июнь 2012 г.</mixed-citation></ref><ref id="B2"><label>2.</label><mixed-citation>Новиков П.В. Правовые аспекты редких (орфанных) заболеваний в России и мире // Медицина, 2013, № 4. - С. 53-73. Электронный ресурс - http://www.fsmj.ru/015133.html</mixed-citation></ref><ref id="B3"><label>3.</label><mixed-citation>Рекомендации круглого стола Комитета Государственной Думы по охране здоровья на тему «О проблеме редких заболеваний в Российской Федерации» 17.02.2011// Комитет Государственной Думы по охране здоровья / Государственная Дума Федерального Собрания Российской Федерации. URL: http://www.komitet2-2.km.duma.gov.ru/site.xp/ 051051049124054056056.html.</mixed-citation></ref><ref id="B4"><label>4.</label><mixed-citation>Kutsev S.I. Put' patsienta s redkim diagnozom: normativnye dokumenty i organizatsiya lechebno-diagnosticheskogo protsessa pri orfannom zabolevanii v Rossiyskoy Federatsii [The way of a patient with a rare diagnosis: regulatory documents and organization of diagnosis and treatment care for orphan diseases in the Russian Federation]. Nervno-myshechnye bolezni 2017; 7 (4): 61-63. (In Russian).</mixed-citation></ref></ref-list></back></article>
