<?xml version="1.0" encoding="ISO-8859-1"?><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">
<front>
<journal-meta>
<journal-id>1657-7027</journal-id>
<journal-title><![CDATA[Revista Gerencia y Políticas de Salud]]></journal-title>
<abbrev-journal-title><![CDATA[Rev. Gerenc. Polit. Salud]]></abbrev-journal-title>
<issn>1657-7027</issn>
<publisher>
<publisher-name><![CDATA[Pontificia Universidad Javeriana]]></publisher-name>
</publisher>
</journal-meta>
<article-meta>
<article-id>S1657-70272018000100112</article-id>
<article-id pub-id-type="doi">10.11144/javeriana.rgps17-34.mase</article-id>
<title-group>
<article-title xml:lang="es"><![CDATA[Modelos de atención en salud en enfermedades raras: revisión sistemática de la literatura]]></article-title>
<article-title xml:lang="en"><![CDATA[Healthcare Models for Rare Diseases: A Systematic Review of the Literature]]></article-title>
<article-title xml:lang="pt"><![CDATA[Modelos de atenção em saúde em doenças raras: revisão sistemática da literatura]]></article-title>
</title-group>
<contrib-group>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Quirland-Lazo]]></surname>
<given-names><![CDATA[Camila]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Castañeda-Cardona]]></surname>
<given-names><![CDATA[Camilo]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Chirveches Calvache]]></surname>
<given-names><![CDATA[María Alejandra]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Aroca]]></surname>
<given-names><![CDATA[Alberto]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Otálora-Esteban]]></surname>
<given-names><![CDATA[Margarita]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
<xref ref-type="aff" rid="Aaf"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Rosselli]]></surname>
<given-names><![CDATA[Diego]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
</contrib-group>
<aff id="Af1">
<institution><![CDATA[,Universidad de Chile  ]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
<country>Chile</country>
</aff>
<aff id="Af2">
<institution><![CDATA[,NeuroEconomix  ]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
<country>Colombia</country>
</aff>
<aff id="Af3">
<institution><![CDATA[,Pontificia Universidad Javeriana  ]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
<country>Colombia</country>
</aff>
<aff id="Af4">
<institution><![CDATA[,Pontificia Universidad Javeriana  ]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
<country>Colombia</country>
</aff>
<aff id="Af5">
<institution><![CDATA[,Hospital Universitario San Ignacio  ]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
<country>Colombia</country>
</aff>
<aff id="Af6">
<institution><![CDATA[,Pontificia Universidad Javeriana  ]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
<country>Colombia</country>
</aff>
<aff id="Af7">
<institution><![CDATA[,Pontificia Universidad Javeriana  ]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
<country>Colombia</country>
</aff>
<pub-date pub-type="pub">
<day>00</day>
<month>06</month>
<year>2018</year>
</pub-date>
<pub-date pub-type="epub">
<day>00</day>
<month>06</month>
<year>2018</year>
</pub-date>
<volume>17</volume>
<numero>34</numero>
<fpage>112</fpage>
<lpage>118</lpage>
<copyright-statement/>
<copyright-year/>
<self-uri xlink:href="http://www.scielo.org.co/scielo.php?script=sci_arttext&amp;pid=S1657-70272018000100112&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://www.scielo.org.co/scielo.php?script=sci_abstract&amp;pid=S1657-70272018000100112&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://www.scielo.org.co/scielo.php?script=sci_pdf&amp;pid=S1657-70272018000100112&amp;lng=en&amp;nrm=iso"></self-uri><abstract abstract-type="short" xml:lang="es"><p><![CDATA[Resumen  Las enfermedades de baja prevalencia requieren modelos de gestión diferentes a los de otras condiciones. Este trabajo buscó recoger las experiencias internacionales. Se realizaron búsquedas en numerosas bases de datos de literatura indexada y de documentos grises. Un panel de expertos de diferentes disciplinas revisó los resúmenes de la literatura y su posible adaptación al contexto colombiano. La búsqueda inicial arrojó 5604 referencias; la búsqueda manual adicionó 31 referencias, finalmente 78 artículos aportaron información útil para el análisis. Los resultados permiten afirmar que existen varios componentes de un modelo de gestión, estos son: políticas, legislación y aspectos administrativos; definición y codificación de enfermedades; investigación y educación; centros especializados, centros de excelencia y redes de atención; diagnóstico, tamizaje, prevención y promoción; inclusión de medicamentos huérfanos; rehabilitación y manejo paliativo; organizaciones de pacientes, grupos o redes de apoyo; y apoyo sociosanitario (inclusión laboral y educativa).]]></p></abstract>
<abstract abstract-type="short" xml:lang="en"><p><![CDATA[Abstract  Low prevalence diseases require management models different from those used in other conditions. This work was intended to gather international experiences on this issue. Searches were made in many indexed literature databases as well as in those with gray literature. A panel of experts from different disciplines checked the abstracts and their potential adaptation into the Colombian context. The initial search retrieved 5604 references and the manual search added other 31 references. At the end, 78 articles provided useful information for the analysis. The results allow to state that a management model consists of several components, to wit: policies, legislation and administrative aspects; definition and coding of the diseases; research and education; specialized centers; excellence centers and service networks; diagnosis, screening, prevention, and promotion; orphan drug inclusion; rehabilitation and palliative care; organizations of patients and support groups or networks; and social-sanitary support (labor and educational inclusion).]]></p></abstract>
<abstract abstract-type="short" xml:lang="pt"><p><![CDATA[Resumo  As doenças de baixa prevalência requerem modelos de gestão diferentes aos de outras condições. Este trabalho visou coletar experiências internacionais. Realizaram-se pesquisas em numerosos bancos de dados de literatura indexada e documentos cinza. Um painel de expertos de diferentes disciplinas revisou os resumos da literatura e sua possível adaptação no contexto colombiano. A procura inicial resultou em 5604 referências; a procura manual adicionou 31 referências, por fim 78 artigos forneceram informações úteis para a análise. Os resultados permitem afirmar que existem vários componentes de um modelo de gestão, quais são: políticas, legislações e aspetos administrativos; definição e codificação de doenças; pesquisa e ensino; centros especializados, centros de excelência e redes de atendimento; diagnóstico, triagem, prevenção e promoção; inclusão de medicamentos órfãos; reabilitação e cuidados paliativos; organizações de pacientes, grupos ou redes de apoio; e apoio sócio-sanitário (inclusão laboral e educativa).]]></p></abstract>
<kwd-group>
<kwd lng="es"><![CDATA[enfermedades raras]]></kwd>
<kwd lng="es"><![CDATA[medicamentos del componente especializado de los servicios farmacéuticos]]></kwd>
<kwd lng="es"><![CDATA[organización y administración]]></kwd>
<kwd lng="es"><![CDATA[manejo de atención al paciente]]></kwd>
<kwd lng="en"><![CDATA[rare diseases]]></kwd>
<kwd lng="en"><![CDATA[drugs in the pharmaceutical service specialized component]]></kwd>
<kwd lng="en"><![CDATA[organization and administration]]></kwd>
<kwd lng="en"><![CDATA[patient service management]]></kwd>
<kwd lng="pt"><![CDATA[doenças raras]]></kwd>
<kwd lng="pt"><![CDATA[medicamentos do componente especializado dos serviços farmacêuticos]]></kwd>
<kwd lng="pt"><![CDATA[organização e administração]]></kwd>
<kwd lng="pt"><![CDATA[manejo de atenção ao paciente]]></kwd>
</kwd-group>
</article-meta>
</front><back>
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