<?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>1645-0086</journal-id>
<journal-title><![CDATA[Psicologia, Saúde & Doenças]]></journal-title>
<abbrev-journal-title><![CDATA[Psic., Saúde & Doenças]]></abbrev-journal-title>
<issn>1645-0086</issn>
<publisher>
<publisher-name><![CDATA[Sociedade Portuguesa de Psicologia da Saúde]]></publisher-name>
</publisher>
</journal-meta>
<article-meta>
<article-id>S1645-00862021000200659</article-id>
<article-id pub-id-type="doi">10.15309/21psd220228</article-id>
<title-group>
<article-title xml:lang="pt"><![CDATA[Vulnerabilidades de cuidadores familiares de pacientes com doenças raras: uma revisão integrativa]]></article-title>
<article-title xml:lang="en"><![CDATA[Vulnerabilities of family caregivers of patients with rare diseases: an integrative review]]></article-title>
</title-group>
<contrib-group>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Brotto]]></surname>
<given-names><![CDATA[Aline]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Rosaneli]]></surname>
<given-names><![CDATA[Caroline]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
</contrib-group>
<aff id="Af1">
<institution><![CDATA[,Pontifícia Universidade Católica do Paraná Escola de Ciências da Vida ]]></institution>
<addr-line><![CDATA[Curitiba ]]></addr-line>
<country>Brazil</country>
</aff>
<pub-date pub-type="pub">
<day>30</day>
<month>09</month>
<year>2021</year>
</pub-date>
<pub-date pub-type="epub">
<day>30</day>
<month>09</month>
<year>2021</year>
</pub-date>
<volume>22</volume>
<numero>2</numero>
<fpage>659</fpage>
<lpage>673</lpage>
<copyright-statement/>
<copyright-year/>
<self-uri xlink:href="http://scielo.pt/scielo.php?script=sci_arttext&amp;pid=S1645-00862021000200659&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://scielo.pt/scielo.php?script=sci_abstract&amp;pid=S1645-00862021000200659&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://scielo.pt/scielo.php?script=sci_pdf&amp;pid=S1645-00862021000200659&amp;lng=en&amp;nrm=iso"></self-uri><abstract abstract-type="short" xml:lang="pt"><p><![CDATA[Resumo Atualmente existem em média 300 milhões de pessoas com algum tipo de doença rara no mundo, essas doenças são progressivas, degenerativas e podem ser fatais, afetando em sua maioria crianças, a partir de um itinerário terapêutico muitas vezes longo. Quando se discute sobre doenças raras automaticamente deve-se pensar em quem acompanha e cuida de tais pessoas, bem como, do seu processo de saúde/doença. Os cuidadores familiares e as pessoas com doenças raras vivenciam uma realidade complexa, repleta de vulnerabilidades. O objetivo deste estudo é analisar sob o ponto de vista bioético as vulnerabilidades dos cuidadores familiares de pacientes com doenças raras. O método é uma revisão integrativa das bases de dados Bireme.org e Scielo.org, com textos completos, de língua portuguesa, espanhola e inglesa, publicados desde 2009 até 2019. Criou-se um quadro que observa as vulnerabilidades programática, individual, social e moral e compôs-se com as análises de textos selecionados. Percebe-se que a vulnerabilidade programática esteve presente na maior parte dos textos, e a vulnerabilidade moral não se mostrou tão presente no discurso dos cuidadores familiares. Conclui-se que é de extrema importância cuidar de quem cuida, para além de redes de apoio e ações políticas, é necessário cuidar da saúde mental de quem assume a responsabilidade do cuidado.]]></p></abstract>
<abstract abstract-type="short" xml:lang="en"><p><![CDATA[Abstract Currently, there are an average of 300 million people with some type of rare disease in the world, these diseases are progressive, degenerative and can be fatal, affecting their many children, from an often long therapeutic itinerary. When he talks about rare diseases, he talks about who accompanies and cares for these people, as well as about their health / disease process. Family caregivers and people with rare diseases experience a complex reality, full of vulnerabilities, such as: programmatic, individual, social and moral vulnerability. The aim of this study is to analyze, from a bioethical point of view, the vulnerabilities of family caregivers of patients with rare diseases. The method is an integrative review of the Bireme.org and Scielo.org databases, with full texts, in Portuguese, Spanish and English, published from 2009 to 2019. It created a table that looks at how vulnerabilities and causes a relationship with how analyzes were performed the texts of the databases already cited. Perhaps a programmatic vulnerability is present in most texts, and a moral vulnerability has not shown so little in the speech of family caregivers. Conclude if it is extremely important to take care of those who care, in addition to support networks and political actions, it is necessary to take care of the mental health of those who assume a responsibility to care, such a responsibility that no one learns to do except in that position.]]></p></abstract>
<kwd-group>
<kwd lng="pt"><![CDATA[Doenças raras]]></kwd>
<kwd lng="pt"><![CDATA[vulnerabilidades]]></kwd>
<kwd lng="pt"><![CDATA[psicologia]]></kwd>
<kwd lng="pt"><![CDATA[bioética]]></kwd>
<kwd lng="pt"><![CDATA[acesso à saúde]]></kwd>
<kwd lng="pt"><![CDATA[saúde mental]]></kwd>
<kwd lng="en"><![CDATA[rare diseases]]></kwd>
<kwd lng="en"><![CDATA[vulnerabilities]]></kwd>
<kwd lng="en"><![CDATA[psychology]]></kwd>
<kwd lng="en"><![CDATA[bioethics]]></kwd>
<kwd lng="en"><![CDATA[access to health]]></kwd>
<kwd lng="en"><![CDATA[mental health]]></kwd>
</kwd-group>
</article-meta>
</front><back>
<ref-list>
<ref id="B1">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Alves]]></surname>
<given-names><![CDATA[L. C.]]></given-names>
</name>
<name>
<surname><![CDATA[Maria]]></surname>
<given-names><![CDATA[B. C. Q. L.]]></given-names>
</name>
<name>
<surname><![CDATA[Carvalho]]></surname>
<given-names><![CDATA[E. L. V. M. S.]]></given-names>
</name>
<name>
<surname><![CDATA[Vasconcelos]]></surname>
<given-names><![CDATA[A. G. G.]]></given-names>
</name>
<name>
<surname><![CDATA[Fonseca]]></surname>
<given-names><![CDATA[T. C. O.]]></given-names>
</name>
<name>
<surname><![CDATA[Laurenti]]></surname>
<given-names><![CDATA[M. L. L. R.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[A in&#64258;uência das doenças crônicas na capacidade funcional dos idosos do Município de São Paulo, Brasil]]></article-title>
<source><![CDATA[Cadernos de Saúde Pública]]></source>
<year>2007</year>
<volume>23</volume>
<numero>8</numero>
<issue>8</issue>
<page-range>1924-30</page-range></nlm-citation>
</ref>
<ref id="B2">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Arduini]]></surname>
<given-names><![CDATA[G. A. O.]]></given-names>
</name>
<name>
<surname><![CDATA[Balarin]]></surname>
<given-names><![CDATA[M. A. S.]]></given-names>
</name>
<name>
<surname><![CDATA[Silva-Grecco]]></surname>
<given-names><![CDATA[R. L.]]></given-names>
</name>
<name>
<surname><![CDATA[Marqui]]></surname>
<given-names><![CDATA[A. B. T.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Conhecimento das puérperas sobre o teste do pezinho]]></article-title>
<source><![CDATA[Revista Paulista de Pediatria]]></source>
<year>2017</year>
<volume>35</volume>
<numero>2</numero>
<issue>2</issue>
<page-range>51-157</page-range></nlm-citation>
</ref>
<ref id="B3">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Aureliano]]></surname>
<given-names><![CDATA[W. A.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Trajetórias terapêuticas familiares: doenças raras hereditárias como sofrimento de longa duração]]></article-title>
<source><![CDATA[Ciência &amp; Saúde Coletiva]]></source>
<year>2018</year>
<volume>23</volume>
<numero>2</numero>
<issue>2</issue>
<page-range>369-79</page-range></nlm-citation>
</ref>
<ref id="B4">
<nlm-citation citation-type="book">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Ayres]]></surname>
<given-names><![CDATA[J.]]></given-names>
</name>
<name>
<surname><![CDATA[Calazans]]></surname>
<given-names><![CDATA[G.]]></given-names>
</name>
<name>
<surname><![CDATA[Saletti]]></surname>
<given-names><![CDATA[F. H. C.]]></given-names>
</name>
<name>
<surname><![CDATA[França]]></surname>
<given-names><![CDATA[I.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Risco, vulnerabilidade e práticas de prevenção e promoção da saúde]]></article-title>
<person-group person-group-type="editor">
<name>
<surname><![CDATA[Campos]]></surname>
<given-names><![CDATA[G.]]></given-names>
</name>
<name>
<surname><![CDATA[Minayo]]></surname>
<given-names><![CDATA[M. C. S.]]></given-names>
</name>
<name>
<surname><![CDATA[Akerman]]></surname>
<given-names><![CDATA[M.]]></given-names>
</name>
<name>
<surname><![CDATA[Drumond]]></surname>
<given-names><![CDATA[M.]]></given-names>
</name>
<name>
<surname><![CDATA[Carvalho]]></surname>
<given-names><![CDATA[Y. M.]]></given-names>
</name>
</person-group>
<source><![CDATA[Tratado de Saúde Coletiva]]></source>
<year>2006</year>
<page-range>375-417</page-range><publisher-name><![CDATA[Editora Fiocruz]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B5">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Babac]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<name>
<surname><![CDATA[Frank]]></surname>
<given-names><![CDATA[M.]]></given-names>
</name>
<name>
<surname><![CDATA[Pauer]]></surname>
<given-names><![CDATA[F.]]></given-names>
</name>
<name>
<surname><![CDATA[Litzkendorf]]></surname>
<given-names><![CDATA[S.]]></given-names>
</name>
<name>
<surname><![CDATA[Rosenfeldt]]></surname>
<given-names><![CDATA[D.]]></given-names>
</name>
<name>
<surname><![CDATA[Lührs]]></surname>
<given-names><![CDATA[V.]]></given-names>
</name>
<name>
<surname><![CDATA[Biehl]]></surname>
<given-names><![CDATA[L.]]></given-names>
</name>
<name>
<surname><![CDATA[Hartz]]></surname>
<given-names><![CDATA[T.]]></given-names>
</name>
<name>
<surname><![CDATA[Storf]]></surname>
<given-names><![CDATA[H.]]></given-names>
</name>
<name>
<surname><![CDATA[Shauer]]></surname>
<given-names><![CDATA[F.]]></given-names>
</name>
<name>
<surname><![CDATA[Wagner]]></surname>
<given-names><![CDATA[T. O. F.]]></given-names>
</name>
<name>
<surname><![CDATA[GrafVon der Schulenburg]]></surname>
<given-names><![CDATA[J. M.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Telephone health services in the field of rare diseases: a qualitative interview study examining the needs of patients, relatives, and health care professionals in Germany]]></article-title>
<source><![CDATA[BMC Health Service Research]]></source>
<year>2018</year>
<volume>18</volume>
<numero>1</numero>
<issue>1</issue>
<page-range>99</page-range></nlm-citation>
</ref>
<ref id="B6">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Baltor]]></surname>
<given-names><![CDATA[M. R. R.]]></given-names>
</name>
<name>
<surname><![CDATA[Matos]]></surname>
<given-names><![CDATA[A. P. K.]]></given-names>
</name>
<name>
<surname><![CDATA[Wernet]]></surname>
<given-names><![CDATA[M.]]></given-names>
</name>
<name>
<surname><![CDATA[Ferreira]]></surname>
<given-names><![CDATA[N. M. L. A.]]></given-names>
</name>
<name>
<surname><![CDATA[Dupas]]></surname>
<given-names><![CDATA[G.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Percepções da família da criança com doença crônica frente às relações com profissionais da saúde]]></article-title>
<source><![CDATA[Revista da Escola de enfermagem USP]]></source>
<year>2013</year>
<volume>47</volume>
<numero>4</numero>
<issue>4</issue>
<page-range>808-14</page-range></nlm-citation>
</ref>
<ref id="B7">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Barbosa]]></surname>
<given-names><![CDATA[R. L.]]></given-names>
</name>
<name>
<surname><![CDATA[Portugal]]></surname>
<given-names><![CDATA[S.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[O Associativismo faz bem à saúde? O caso das doenças raras]]></article-title>
<source><![CDATA[Ciência &amp; Saúde Coletiva]]></source>
<year>2018</year>
<volume>23</volume>
<numero>2</numero>
<issue>2</issue>
<page-range>417-30</page-range></nlm-citation>
</ref>
<ref id="B8">
<nlm-citation citation-type="book">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Barchifontaine]]></surname>
<given-names><![CDATA[Christian P.]]></given-names>
</name>
<name>
<surname><![CDATA[Zoboli]]></surname>
<given-names><![CDATA[Elma L. C. P.]]></given-names>
</name>
</person-group>
<source><![CDATA[Bioética, vulnerabilidade e saúde]]></source>
<year>2007</year>
<publisher-loc><![CDATA[Aparecida ]]></publisher-loc>
<publisher-name><![CDATA[Ideias &amp; Letras: Centro Universitário São Camilo]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B9">
<nlm-citation citation-type="book">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Beauchamp]]></surname>
<given-names><![CDATA[T. L.]]></given-names>
</name>
<name>
<surname><![CDATA[Childress]]></surname>
<given-names><![CDATA[J. F.]]></given-names>
</name>
</person-group>
<source><![CDATA[Princípios de Ética Biomédica]]></source>
<year>2002</year>
<edition>4</edition>
<publisher-name><![CDATA[Edições Loyola]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B10">
<nlm-citation citation-type="">
<collab>Belmont Report</collab>
<source><![CDATA[Tradução UFRGS]]></source>
<year>1978</year>
</nlm-citation>
</ref>
<ref id="B11">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Bosch]]></surname>
<given-names><![CDATA[A. M.]]></given-names>
</name>
<name>
<surname><![CDATA[Burlina]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<name>
<surname><![CDATA[Cunningham]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<name>
<surname><![CDATA[Bettiol]]></surname>
<given-names><![CDATA[E.]]></given-names>
</name>
<name>
<surname><![CDATA[Moreau-Stucker]]></surname>
<given-names><![CDATA[F.]]></given-names>
</name>
<name>
<surname><![CDATA[Koledova]]></surname>
<given-names><![CDATA[E.]]></given-names>
</name>
<name>
<surname><![CDATA[Regnault]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Assessment of the impact of phenylketonuria and its treatment on quality of life of patients and parents from seven European countries]]></article-title>
<source><![CDATA[Orphanet Journal of Rare Disease]]></source>
<year>2015</year>
<volume>10</volume>
<numero>80</numero>
<issue>80</issue>
<page-range>1-14</page-range></nlm-citation>
</ref>
<ref id="B12">
<nlm-citation citation-type="">
<collab>Brasil</collab>
<source><![CDATA[Doenças raras: Brasil avança na assistência e tratamento de pacientes. Notícia da agencia de saúde]]></source>
<year>2014</year>
</nlm-citation>
</ref>
<ref id="B13">
<nlm-citation citation-type="">
<collab>Brasil</collab>
<source><![CDATA[Portaria nº 199, de 30 de janeiro de 2014. Institui a Política Nacional de Atenção Integral às Pessoas com Doenças Raras, aprova as Diretrizes para Atenção Integral às Pessoas com Doenças Raras no âmbito do Sistema Único de Saúde (SUS) e institui incentivos financeiros de custeio]]></source>
<year>2014</year>
</nlm-citation>
</ref>
<ref id="B14">
<nlm-citation citation-type="">
<collab>Brasil. Ministério da Saúde</collab>
<source><![CDATA[Secretaria de atenção à saúde departamento de atenção básica coordenação-geral de atenção domiciliar Caderno de Atenção Domiciliar, v.1]]></source>
<year>2012</year>
</nlm-citation>
</ref>
<ref id="B15">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Bruns]]></surname>
<given-names><![CDATA[D.]]></given-names>
</name>
<name>
<surname><![CDATA[Foerster]]></surname>
<given-names><![CDATA[K.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[We've been through it all together': supports for parents with children with rare trisomy conditions]]></article-title>
<source><![CDATA[Journal of Intelectual Disability Research]]></source>
<year>2011</year>
<volume>55</volume>
<numero>4</numero>
<issue>4</issue>
<page-range>361-9</page-range></nlm-citation>
</ref>
<ref id="B16">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Cardoso]]></surname>
<given-names><![CDATA[L.]]></given-names>
</name>
<name>
<surname><![CDATA[Galera]]></surname>
<given-names><![CDATA[S. A. F.]]></given-names>
</name>
<name>
<surname><![CDATA[Vieira]]></surname>
<given-names><![CDATA[M. V.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[O cuidador e a sobrecarga do cuidado à saúde de pacientes egressos de internação psiquiátrica]]></article-title>
<source><![CDATA[Acta Paulista de Enfermagem]]></source>
<year>2012</year>
<volume>25</volume>
<numero>4</numero>
<issue>4</issue>
<page-range>517-23</page-range></nlm-citation>
</ref>
<ref id="B17">
<nlm-citation citation-type="book">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Cardoso]]></surname>
<given-names><![CDATA[J. V.]]></given-names>
</name>
</person-group>
<source><![CDATA[Medicamentos órfãos no Sul global: Biossociabilidade, regulação e judicialização da vida]]></source>
<year>2018</year>
<publisher-name><![CDATA[Universidade de São Paulo]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B18">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Carvalho]]></surname>
<given-names><![CDATA[R. T.]]></given-names>
</name>
<name>
<surname><![CDATA[Rocha]]></surname>
<given-names><![CDATA[D. G.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Programa de Aquisição de Alimentos: a lente bioética na segurança alimentar]]></article-title>
<source><![CDATA[Rev. bioét]]></source>
<year>2013</year>
<volume>21</volume>
<numero>2</numero>
<issue>2</issue>
<page-range>278-90</page-range></nlm-citation>
</ref>
<ref id="B19">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Currie]]></surname>
<given-names><![CDATA[G.]]></given-names>
</name>
<name>
<surname><![CDATA[Szabo]]></surname>
<given-names><![CDATA[J.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA["It is like a jungle gym, and everything is under construction": The parent's perspective of caring for a child with a rare disease]]></article-title>
<source><![CDATA[Child Care Health and Development]]></source>
<year>2019</year>
<volume>45</volume>
<page-range>96-103</page-range></nlm-citation>
</ref>
<ref id="B20">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Delisle]]></surname>
<given-names><![CDATA[V. C.]]></given-names>
</name>
<name>
<surname><![CDATA[Gumuchian]]></surname>
<given-names><![CDATA[S. T.]]></given-names>
</name>
<name>
<surname><![CDATA[Rice]]></surname>
<given-names><![CDATA[D. B.]]></given-names>
</name>
<name>
<surname><![CDATA[Levis]]></surname>
<given-names><![CDATA[A. W.]]></given-names>
</name>
<name>
<surname><![CDATA[Kloda]]></surname>
<given-names><![CDATA[L. A.]]></given-names>
</name>
<name>
<surname><![CDATA[Körner]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<name>
<surname><![CDATA[Thombs]]></surname>
<given-names><![CDATA[B. D.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Perceived benefits and factors that influence the ability to establish and maintain patient support groups in rare diseases: A scoping review]]></article-title>
<source><![CDATA[Patient]]></source>
<year>2017</year>
<volume>10</volume>
<numero>3</numero>
<issue>3</issue>
<page-range>283-93</page-range></nlm-citation>
</ref>
<ref id="B21">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Dias]]></surname>
<given-names><![CDATA[A. M.]]></given-names>
</name>
<name>
<surname><![CDATA[Cunha]]></surname>
<given-names><![CDATA[M.]]></given-names>
</name>
<name>
<surname><![CDATA[Santos]]></surname>
<given-names><![CDATA[A. M. M.]]></given-names>
</name>
<name>
<surname><![CDATA[Neves]]></surname>
<given-names><![CDATA[A. P. G.]]></given-names>
</name>
<name>
<surname><![CDATA[Pinto]]></surname>
<given-names><![CDATA[A. F. C.]]></given-names>
</name>
<name>
<surname><![CDATA[Silva]]></surname>
<given-names><![CDATA[A. S. A.]]></given-names>
</name>
<name>
<surname><![CDATA[Castro]]></surname>
<given-names><![CDATA[S. A.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Adesão ao regime terapêutico na doença crónica: revisão da literatura]]></article-title>
<source><![CDATA[Millenium]]></source>
<year>2011</year>
<volume>40</volume>
<page-range>201&#8208;219</page-range></nlm-citation>
</ref>
<ref id="B22">
<nlm-citation citation-type="">
<collab>Eurodis</collab>
<source><![CDATA[Rare diseases europeu. Política de Doenças Raras]]></source>
<year>2005</year>
</nlm-citation>
</ref>
<ref id="B23">
<nlm-citation citation-type="">
<collab>European Journal of Human Genetics</collab>
<source><![CDATA[European Journal of Human Genetics]]></source>
<year>2019</year>
</nlm-citation>
</ref>
<ref id="B24">
<nlm-citation citation-type="book">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Faria]]></surname>
<given-names><![CDATA[H. T. G.]]></given-names>
</name>
</person-group>
<source><![CDATA[Fatores relacionados à adesão do paciente diabético à terapêutica medicamentosa]]></source>
<year>2008</year>
<publisher-name><![CDATA[Universidade de São Paulo, Escola de Enfermagem de Ribeirão Preto]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B25">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Fortes]]></surname>
<given-names><![CDATA[P. A. C.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[A bioética em um mundo em transformação]]></article-title>
<source><![CDATA[Revista Bioética]]></source>
<year>2011</year>
<volume>19</volume>
<numero>2</numero>
<issue>2</issue>
<page-range>319-27</page-range></nlm-citation>
</ref>
<ref id="B26">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Franciscatto]]></surname>
<given-names><![CDATA[L. H. G.]]></given-names>
</name>
<name>
<surname><![CDATA[Silva]]></surname>
<given-names><![CDATA[M. R. S.]]></given-names>
</name>
<name>
<surname><![CDATA[Santos]]></surname>
<given-names><![CDATA[A. M.]]></given-names>
</name>
<name>
<surname><![CDATA[Oliveira-Netto]]></surname>
<given-names><![CDATA[A. M.]]></given-names>
</name>
<name>
<surname><![CDATA[Salvador]]></surname>
<given-names><![CDATA[K.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Doença genética na família: trajetórias e experiências em serviços públicos de saúde]]></article-title>
<source><![CDATA[Escola Anna Nery]]></source>
<year>2020</year>
<volume>24</volume>
<numero>1</numero>
<issue>1</issue>
</nlm-citation>
</ref>
<ref id="B27">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Gee]]></surname>
<given-names><![CDATA[M.]]></given-names>
</name>
<name>
<surname><![CDATA[Piercy]]></surname>
<given-names><![CDATA[H.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Family planning decisions for parents of children with a rare genetic condition: a scope review]]></article-title>
<source><![CDATA[Sexual &amp; Reproductive Healthcare]]></source>
<year>2018</year>
<volume>14</volume>
<page-range>1-6</page-range></nlm-citation>
</ref>
<ref id="B28">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Guedes]]></surname>
<given-names><![CDATA[C.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Decisões reprodutivas e triagem neonatal: a perspectiva de mulheres cuidadoras de crianças com doença falciforme]]></article-title>
<source><![CDATA[Ciência &amp; Saúde Coletiva]]></source>
<year>2012</year>
<volume>17</volume>
<numero>9</numero>
<issue>9</issue>
<page-range>2367-76</page-range></nlm-citation>
</ref>
<ref id="B29">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Guimarães]]></surname>
<given-names><![CDATA[T.M.R.]]></given-names>
</name>
<name>
<surname><![CDATA[Miranda]]></surname>
<given-names><![CDATA[W.L.]]></given-names>
</name>
<name>
<surname><![CDATA[Tavares]]></surname>
<given-names><![CDATA[M.M.F.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[O cotidiano das famílias de crianças e adolescentes portadores de anemia falciforme]]></article-title>
<source><![CDATA[Revista Brasileira de Hematologia e Hemoterapia]]></source>
<year>2009</year>
<volume>31</volume>
<numero>1</numero>
<issue>1</issue>
<page-range>9-14</page-range></nlm-citation>
</ref>
<ref id="B30">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Haukeland]]></surname>
<given-names><![CDATA[Y. B.]]></given-names>
</name>
<name>
<surname><![CDATA[Fjermestad]]></surname>
<given-names><![CDATA[K. W.]]></given-names>
</name>
<name>
<surname><![CDATA[Mossige]]></surname>
<given-names><![CDATA[S.]]></given-names>
</name>
<name>
<surname><![CDATA[Vatne]]></surname>
<given-names><![CDATA[T. M.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Emotional experiences among siblings of children with rare disorders]]></article-title>
<source><![CDATA[Journal of Pediatrics Psychology]]></source>
<year>2015</year>
<volume>40</volume>
<numero>7</numero>
<issue>7</issue>
<page-range>712-20</page-range></nlm-citation>
</ref>
<ref id="B31">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Iriart]]></surname>
<given-names><![CDATA[J. A. B.]]></given-names>
</name>
<name>
<surname><![CDATA[Nucci]]></surname>
<given-names><![CDATA[M. F.]]></given-names>
</name>
<name>
<surname><![CDATA[Muniz]]></surname>
<given-names><![CDATA[T. P.]]></given-names>
</name>
<name>
<surname><![CDATA[Viana]]></surname>
<given-names><![CDATA[G. B.]]></given-names>
</name>
<name>
<surname><![CDATA[Aureliano]]></surname>
<given-names><![CDATA[W. A.]]></given-names>
</name>
<name>
<surname><![CDATA[Gibbon]]></surname>
<given-names><![CDATA[S.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Da busca pelo diagnóstico às incertezas do tratamento: desafios do cuidado para as doenças genéticas raras no Brasil]]></article-title>
<source><![CDATA[Ciência &amp; Saúde Coletiva]]></source>
<year>2019</year>
<volume>24</volume>
<numero>10</numero>
<issue>10</issue>
<page-range>3637-50</page-range></nlm-citation>
</ref>
<ref id="B32">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Johansen]]></surname>
<given-names><![CDATA[H.]]></given-names>
</name>
<name>
<surname><![CDATA[Dammann]]></surname>
<given-names><![CDATA[B.]]></given-names>
</name>
<name>
<surname><![CDATA[Andresen]]></surname>
<given-names><![CDATA[I. L]]></given-names>
</name>
<name>
<surname><![CDATA[Fagerland]]></surname>
<given-names><![CDATA[M. W.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Health-related quality of life for children with rare diagnoses, their parent´s satisfaction with life and the association between the two]]></article-title>
<source><![CDATA[Health Qual Life Outcomes]]></source>
<year>2013</year>
<volume>11</volume>
<page-range>152</page-range></nlm-citation>
</ref>
<ref id="B33">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Johnson]]></surname>
<given-names><![CDATA[J.]]></given-names>
</name>
<name>
<surname><![CDATA[Adams-Spink]]></surname>
<given-names><![CDATA[G.]]></given-names>
</name>
<name>
<surname><![CDATA[Arndt]]></surname>
<given-names><![CDATA[T.]]></given-names>
</name>
<name>
<surname><![CDATA[Wijeratne]]></surname>
<given-names><![CDATA[D.]]></given-names>
</name>
<name>
<surname><![CDATA[Heyhoe]]></surname>
<given-names><![CDATA[J.]]></given-names>
</name>
<name>
<surname><![CDATA[Taylor]]></surname>
<given-names><![CDATA[P.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Providing family-centred care for rare diseases in maternity services: Parent satisfaction and preferences when dysmelia is identified]]></article-title>
<source><![CDATA[Women Birth]]></source>
<year>2016</year>
<volume>29</volume>
<numero>6</numero>
<issue>6</issue>
<page-range>e99-e104</page-range></nlm-citation>
</ref>
<ref id="B34">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Kang]]></surname>
<given-names><![CDATA[H.]]></given-names>
</name>
<name>
<surname><![CDATA[McCarthy]]></surname>
<given-names><![CDATA[V. P.]]></given-names>
</name>
<name>
<surname><![CDATA[Leroy]]></surname>
<given-names><![CDATA[B.S.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Concerns of South Korean patients and family members affected with genetic conditions: a content analysis of internet website messages]]></article-title>
<source><![CDATA[Journal of Genetic Counseling]]></source>
<year>2010</year>
<volume>19</volume>
<numero>3</numero>
<issue>3</issue>
<page-range>280-95</page-range></nlm-citation>
</ref>
<ref id="B35">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Khodyakov]]></surname>
<given-names><![CDATA[D.]]></given-names>
</name>
<name>
<surname><![CDATA[Kinnett]]></surname>
<given-names><![CDATA[K.]]></given-names>
</name>
<name>
<surname><![CDATA[Grant]]></surname>
<given-names><![CDATA[S.]]></given-names>
</name>
<name>
<surname><![CDATA[Lucas]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<name>
<surname><![CDATA[Martin]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<name>
<surname><![CDATA[Denger]]></surname>
<given-names><![CDATA[B.]]></given-names>
</name>
<name>
<surname><![CDATA[Peay]]></surname>
<given-names><![CDATA[H.]]></given-names>
</name>
<name>
<surname><![CDATA[Coulter]]></surname>
<given-names><![CDATA[I.]]></given-names>
</name>
<name>
<surname><![CDATA[Fink]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Engaging patients and caregivers managing rare diseases to improve the methods of clinical guideline development: A research protocol]]></article-title>
<source><![CDATA[JMIR Research Protocols]]></source>
<year>2017</year>
<volume>6</volume>
<numero>4</numero>
<issue>4</issue>
</nlm-citation>
</ref>
<ref id="B36">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Koehly]]></surname>
<given-names><![CDATA[L. M.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[It's interpersonal: Family relationships, genetic risk, and caregiving]]></article-title>
<source><![CDATA[Gerontologist]]></source>
<year>2017</year>
<volume>57</volume>
<numero>1</numero>
<issue>1</issue>
<page-range>32-9</page-range></nlm-citation>
</ref>
<ref id="B37">
<nlm-citation citation-type="book">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Kublre-Ross]]></surname>
<given-names><![CDATA[E.]]></given-names>
</name>
</person-group>
<source><![CDATA[Sobre a Morte e o Morrer]]></source>
<year>2009</year>
<edition>9</edition>
<publisher-name><![CDATA[Wmf Martins Fontes]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B38">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Leão]]></surname>
<given-names><![CDATA[L. L.]]></given-names>
</name>
<name>
<surname><![CDATA[Aguiar]]></surname>
<given-names><![CDATA[M. J. B.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Triagem neonatal: o que os pediatras deveriam saber]]></article-title>
<source><![CDATA[Jornal de Pediatria]]></source>
<year>2008</year>
<volume>84</volume>
<numero>4</numero>
<issue>4</issue>
<page-range>S80-90</page-range></nlm-citation>
</ref>
<ref id="B39">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Loio]]></surname>
<given-names><![CDATA[M.]]></given-names>
</name>
<name>
<surname><![CDATA[Salgueiro]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<name>
<surname><![CDATA[Cruz]]></surname>
<given-names><![CDATA[H.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Dermatomiosite juvenil - papel do médico de família na abordagem de uma doença rara]]></article-title>
<source><![CDATA[Revista Brasileira de Medicina de Família e Comunidade]]></source>
<year>2018</year>
<volume>12</volume>
<numero>39</numero>
<issue>39</issue>
<page-range>1-8</page-range></nlm-citation>
</ref>
<ref id="B40">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Lopes]]></surname>
<given-names><![CDATA[M. T.]]></given-names>
</name>
<name>
<surname><![CDATA[Koch]]></surname>
<given-names><![CDATA[V. H.]]></given-names>
</name>
<name>
<surname><![CDATA[Sarrubbi-Junior]]></surname>
<given-names><![CDATA[V.]]></given-names>
</name>
<name>
<surname><![CDATA[Gallo]]></surname>
<given-names><![CDATA[P. R.]]></given-names>
</name>
<name>
<surname><![CDATA[Carneiro-Sampaio]]></surname>
<given-names><![CDATA[M.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Difficulties in the diagnosis and treatment of rare diseases according to the perceptions of patients, relatives and health care professionals]]></article-title>
<source><![CDATA[Clinics]]></source>
<year>2018</year>
<volume>73</volume>
</nlm-citation>
</ref>
<ref id="B41">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Luz]]></surname>
<given-names><![CDATA[G. S.]]></given-names>
</name>
<name>
<surname><![CDATA[Silva]]></surname>
<given-names><![CDATA[M. R. S.]]></given-names>
</name>
<name>
<surname><![CDATA[DeMontigny]]></surname>
<given-names><![CDATA[F.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Necessidades prioritárias referidas por famílias de pacientes com doenças raras]]></article-title>
<source><![CDATA[Texto Contexto Enfermagem]]></source>
<year>2016</year>
<volume>25</volume>
<numero>4</numero>
<issue>4</issue>
</nlm-citation>
</ref>
<ref id="B42">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Luz]]></surname>
<given-names><![CDATA[S. G.]]></given-names>
</name>
<name>
<surname><![CDATA[Silva]]></surname>
<given-names><![CDATA[M. R. S.]]></given-names>
</name>
<name>
<surname><![CDATA[DeMontigny]]></surname>
<given-names><![CDATA[F.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Doenças raras: itinerário diagnóstico e terapêutico das famílias de pessoas afetadas]]></article-title>
<source><![CDATA[Acta Paulista de Enfermagem]]></source>
<year>2015</year>
<volume>28</volume>
<numero>5</numero>
<issue>5</issue>
<page-range>395-400</page-range></nlm-citation>
</ref>
<ref id="B43">
<nlm-citation citation-type="book">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Machado]]></surname>
<given-names><![CDATA[M. M. P.]]></given-names>
</name>
</person-group>
<source><![CDATA[Adesão o Regime Terapêutico: Representações das Pessoas com IRC sobre o contributo dos Enfermeiros]]></source>
<year>2009</year>
<publisher-name><![CDATA[Instituto de Educação e Psicologia]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B44">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Malcolm]]></surname>
<given-names><![CDATA[C.]]></given-names>
</name>
<name>
<surname><![CDATA[Forbat]]></surname>
<given-names><![CDATA[L.]]></given-names>
</name>
<name>
<surname><![CDATA[Anderson]]></surname>
<given-names><![CDATA[G.]]></given-names>
</name>
<name>
<surname><![CDATA[Gibson]]></surname>
<given-names><![CDATA[F.]]></given-names>
</name>
<name>
<surname><![CDATA[Hain]]></surname>
<given-names><![CDATA[R]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Challenging symptoms in children with rare life-limiting conditions: findings from a prospective diary and interview study with families]]></article-title>
<source><![CDATA[Acta Paediatrica]]></source>
<year>2012</year>
<volume>101</volume>
<numero>9</numero>
<issue>9</issue>
<page-range>985-92</page-range></nlm-citation>
</ref>
<ref id="B45">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Mano]]></surname>
<given-names><![CDATA[G. P.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Avaliação de pacientes hipertensos acompanhados pelo Programa Saúde da Família em um Centro de Saúde Escola]]></article-title>
<source><![CDATA[Acta Paulista de Enfermagem]]></source>
<year>2005</year>
<volume>18</volume>
<numero>3</numero>
<issue>3</issue>
<page-range>269-175</page-range></nlm-citation>
</ref>
<ref id="B46">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Martins]]></surname>
<given-names><![CDATA[A. J.]]></given-names>
</name>
<name>
<surname><![CDATA[Cardoso]]></surname>
<given-names><![CDATA[M. H. A.]]></given-names>
</name>
<name>
<surname><![CDATA[Júnior]]></surname>
<given-names><![CDATA[J. C. L.]]></given-names>
</name>
<name>
<surname><![CDATA[Moreira]]></surname>
<given-names><![CDATA[M. C. N.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[A concepção de família e religiosidade presente nos discursos produzidos por profissionais médicos acerca de crianças com doenças genéticas]]></article-title>
<source><![CDATA[Ciência &amp; Saúde Coletiva]]></source>
<year>2012</year>
<volume>17</volume>
<numero>2</numero>
<issue>2</issue>
<page-range>545-53</page-range></nlm-citation>
</ref>
<ref id="B47">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Matilda]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<name>
<surname><![CDATA[Junior]]></surname>
<given-names><![CDATA[E. E.]]></given-names>
</name>
<name>
<surname><![CDATA[Zurynski]]></surname>
<given-names><![CDATA[Y. A]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support]]></article-title>
<source><![CDATA[Orphanet Journal of Rare Diseases]]></source>
<year>2013</year>
<volume>8</volume>
<numero>22</numero>
<issue>22</issue>
<page-range>1-9</page-range></nlm-citation>
</ref>
<ref id="B48">
<nlm-citation citation-type="book">
<person-group person-group-type="author">
<name>
<surname><![CDATA[McGoldrick]]></surname>
<given-names><![CDATA[M.]]></given-names>
</name>
</person-group>
<source><![CDATA[Novas abordagens da terapia familiar: raça, cultura e gênero na prática clínica]]></source>
<year>2003</year>
<publisher-name><![CDATA[Roca]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B49">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Moreira]]></surname>
<given-names><![CDATA[M. C. N.]]></given-names>
</name>
<name>
<surname><![CDATA[Nascimento]]></surname>
<given-names><![CDATA[M. A. F.]]></given-names>
</name>
<name>
<surname><![CDATA[Campos]]></surname>
<given-names><![CDATA[D. S.]]></given-names>
</name>
<name>
<surname><![CDATA[Albernaz]]></surname>
<given-names><![CDATA[L.]]></given-names>
</name>
<name>
<surname><![CDATA[Costa]]></surname>
<given-names><![CDATA[A. C. C.]]></given-names>
</name>
<name>
<surname><![CDATA[Barros]]></surname>
<given-names><![CDATA[L. B. P.]]></given-names>
</name>
<name>
<surname><![CDATA[Horovitz]]></surname>
<given-names><![CDATA[D. D. G.]]></given-names>
</name>
<name>
<surname><![CDATA[Martins]]></surname>
<given-names><![CDATA[A. J.]]></given-names>
</name>
<name>
<surname><![CDATA[Oliveira]]></surname>
<given-names><![CDATA[N. V.]]></given-names>
</name>
<name>
<surname><![CDATA[Pinto]]></surname>
<given-names><![CDATA[M.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Adoecimentos raros e o diálogo associativo: ressignificações para experiências morais]]></article-title>
<source><![CDATA[Ciência &amp; Saúde Coletiva]]></source>
<year>2019</year>
<volume>24</volume>
<numero>10</numero>
<issue>10</issue>
<page-range>3673-82</page-range></nlm-citation>
</ref>
<ref id="B50">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Mori]]></surname>
<given-names><![CDATA[Y.]]></given-names>
</name>
<name>
<surname><![CDATA[Downs]]></surname>
<given-names><![CDATA[J.]]></given-names>
</name>
<name>
<surname><![CDATA[Wong]]></surname>
<given-names><![CDATA[K.]]></given-names>
</name>
<name>
<surname><![CDATA[Anderson]]></surname>
<given-names><![CDATA[B.]]></given-names>
</name>
<name>
<surname><![CDATA[Epstein]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<name>
<surname><![CDATA[Leonard]]></surname>
<given-names><![CDATA[H.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life]]></article-title>
<source><![CDATA[Orphanet Journal of Rare Diseases]]></source>
<year>2017</year>
<volume>12</volume>
<numero>16</numero>
<issue>16</issue>
<page-range>1-15</page-range></nlm-citation>
</ref>
<ref id="B51">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Nunnemann]]></surname>
<given-names><![CDATA[S.]]></given-names>
</name>
<name>
<surname><![CDATA[Kurz]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<name>
<surname><![CDATA[Leucht]]></surname>
<given-names><![CDATA[S.]]></given-names>
</name>
<name>
<surname><![CDATA[Diehl-Schmid]]></surname>
<given-names><![CDATA[J.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Caregivers of patients with frontotemporal lobar degeneration: a review of burden, problems, needs, and interventions]]></article-title>
<source><![CDATA[International Psychogeriatrics]]></source>
<year>2012</year>
<volume>24</volume>
<numero>9</numero>
<issue>9</issue>
<page-range>1368-86</page-range></nlm-citation>
</ref>
<ref id="B52">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Oliveira]]></surname>
<given-names><![CDATA[A. P. B.]]></given-names>
</name>
<name>
<surname><![CDATA[Schimidt]]></surname>
<given-names><![CDATA[B. D.]]></given-names>
</name>
<name>
<surname><![CDATA[Santos]]></surname>
<given-names><![CDATA[C. J.]]></given-names>
</name>
<name>
<surname><![CDATA[Amatneeks]]></surname>
<given-names><![CDATA[T. M.]]></given-names>
</name>
<name>
<surname><![CDATA[Cavallet]]></surname>
<given-names><![CDATA[L. H. R.]]></given-names>
</name>
<name>
<surname><![CDATA[Michel]]></surname>
<given-names><![CDATA[R. B.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Qualidade de vida de pacientes em hemodiálise e sua relação com mortalidade, hospitalizações e má adesão ao tratamento]]></article-title>
<source><![CDATA[Brazilian Journal Nefrology]]></source>
<year>2016</year>
<volume>38</volume>
<numero>4</numero>
<issue>4</issue>
<page-range>411-20</page-range></nlm-citation>
</ref>
<ref id="B53">
<nlm-citation citation-type="">
<collab>Organização Mundial da Saúde</collab>
<source><![CDATA[Determinantes Sociais e Riscos para a Saúde, Doenças Crônicas Não Transmissíveis e Saúde Mental]]></source>
<year>2018</year>
</nlm-citation>
</ref>
<ref id="B54">
<nlm-citation citation-type="book">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Pais-Ribeiro]]></surname>
<given-names><![CDATA[J. L.]]></given-names>
</name>
</person-group>
<source><![CDATA[Introdução à Psicologia da Saúde]]></source>
<year>2007</year>
<edition>2</edition>
<publisher-name><![CDATA[Quarteto]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B55">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Pelentsov]]></surname>
<given-names><![CDATA[L. J.]]></given-names>
</name>
<name>
<surname><![CDATA[Andrea]]></surname>
<given-names><![CDATA[L.]]></given-names>
</name>
<name>
<surname><![CDATA[Fielder]]></surname>
<given-names><![CDATA[T. A. L.]]></given-names>
</name>
<name>
<surname><![CDATA[Adrian]]></surname>
<given-names><![CDATA[J. E.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[The supportive care needs of parents with a child with a rare disease: A qualitative descriptive study]]></article-title>
<source><![CDATA[Journal of Pediatr Nursing]]></source>
<year>2016</year>
<volume>31</volume>
<numero>3</numero>
<issue>3</issue>
<page-range>e207-18</page-range></nlm-citation>
</ref>
<ref id="B56">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Salles]]></surname>
<given-names><![CDATA[A. A.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Aspectos éticos dos testes preditivos em doenças de manifestação tardia]]></article-title>
<source><![CDATA[Revista Brasileira de Saúde Materno Infantil]]></source>
<year>2010</year>
<volume>10</volume>
<numero>2</numero>
<issue>2</issue>
<page-range>S271-7</page-range></nlm-citation>
</ref>
<ref id="B57">
<nlm-citation citation-type="book">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Sanches]]></surname>
<given-names><![CDATA[M. A.]]></given-names>
</name>
</person-group>
<source><![CDATA[Bioética ciência e transcendência]]></source>
<year>2004</year>
<publisher-name><![CDATA[Loyola]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B58">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Sanches]]></surname>
<given-names><![CDATA[M. A.]]></given-names>
</name>
<name>
<surname><![CDATA[Mannes]]></surname>
<given-names><![CDATA[M.]]></given-names>
</name>
<name>
<surname><![CDATA[Cunha]]></surname>
<given-names><![CDATA[T. R.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Vulnerabilidade moral: leitura das exclusões no contexto da bioética]]></article-title>
<source><![CDATA[Revista de Bioética]]></source>
<year>2018</year>
<volume>26</volume>
<numero>1</numero>
<issue>1</issue>
<page-range>39-46</page-range></nlm-citation>
</ref>
<ref id="B59">
<nlm-citation citation-type="book">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Schramm]]></surname>
<given-names><![CDATA[F. R.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[A bioética da proteção em saúde pública]]></article-title>
<person-group person-group-type="editor">
<name>
<surname><![CDATA[Fortes]]></surname>
<given-names><![CDATA[P. A. C.]]></given-names>
</name>
<name>
<surname><![CDATA[Zoboli]]></surname>
<given-names><![CDATA[E. L. C. P]]></given-names>
</name>
</person-group>
<source><![CDATA[Bioética e saúde pública]]></source>
<year>2003</year>
<page-range>71-84</page-range><publisher-name><![CDATA[Loyola]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B60">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Schramm]]></surname>
<given-names><![CDATA[F. R.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[A bioética de proteção: uma ferramenta para a avaliação das práticas sanitárias?]]></article-title>
<source><![CDATA[Ciência &amp; Saúde coletiva]]></source>
<year>2017</year>
<volume>22</volume>
<numero>5</numero>
<issue>5</issue>
<page-range>1531-8</page-range></nlm-citation>
</ref>
<ref id="B61">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Silibello]]></surname>
<given-names><![CDATA[G.]]></given-names>
</name>
<name>
<surname><![CDATA[Vizziello]]></surname>
<given-names><![CDATA[P.]]></given-names>
</name>
<name>
<surname><![CDATA[Gallucci]]></surname>
<given-names><![CDATA[M.]]></given-names>
</name>
<name>
<surname><![CDATA[Selicorni]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<name>
<surname><![CDATA[Milani]]></surname>
<given-names><![CDATA[D.]]></given-names>
</name>
<name>
<surname><![CDATA[Ajmone]]></surname>
<given-names><![CDATA[P. F.]]></given-names>
</name>
<name>
<surname><![CDATA[Ridamonti]]></surname>
<given-names><![CDATA[S.]]></given-names>
</name>
<name>
<surname><![CDATA[de Stefano]]></surname>
<given-names><![CDATA[S]]></given-names>
</name>
<name>
<surname><![CDATA[Lalatta]]></surname>
<given-names><![CDATA[F.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Daily life changes and adaptations investigated in 154 families with a child suffering from a rare disability at a public centre for rare diseases in Northern Italy]]></article-title>
<source><![CDATA[Italian Journal of Pediatrics]]></source>
<year>2016</year>
<volume>42</volume>
<numero>1</numero>
<issue>1</issue>
<page-range>76</page-range></nlm-citation>
</ref>
<ref id="B62">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Silva]]></surname>
<given-names><![CDATA[M. P. C.]]></given-names>
</name>
<name>
<surname><![CDATA[Contim]]></surname>
<given-names><![CDATA[D.]]></given-names>
</name>
<name>
<surname><![CDATA[Ferreira]]></surname>
<given-names><![CDATA[L. A.]]></given-names>
</name>
<name>
<surname><![CDATA[Marqui]]></surname>
<given-names><![CDATA[A. B. T.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Teste do pezinho: percepção das gestantes nas orientações no pré-natal]]></article-title>
<source><![CDATA[Revista Brasileira de Saúde Materno Infantil]]></source>
<year>2017</year>
<volume>17</volume>
<numero>2</numero>
<issue>2</issue>
<page-range>299-305</page-range></nlm-citation>
</ref>
<ref id="B63">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Soares]]></surname>
<given-names><![CDATA[J. L.]]></given-names>
</name>
<name>
<surname><![CDATA[Araújo]]></surname>
<given-names><![CDATA[L. F. S.]]></given-names>
</name>
<name>
<surname><![CDATA[Bellato]]></surname>
<given-names><![CDATA[R.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Cuidar na situação de adoecimento raro: vivência da família e sua busca por amparo dos serviços de saúde]]></article-title>
<source><![CDATA[Saude &amp; Sociedade]]></source>
<year>2016</year>
<volume>25</volume>
<numero>4</numero>
<issue>4</issue>
<page-range>1017-30</page-range></nlm-citation>
</ref>
<ref id="B64">
<nlm-citation citation-type="">
<collab>UNESCO</collab>
<source><![CDATA[Declaração Universal sobre Bioética e Direitos Humanos (2005). Tradução e revisão final sob a responsabilidade da Cátedra UNESCO de Bioética da Universidade de Brasília (UnB) e da Sociedade Brasileira de Bioética (SBB)]]></source>
<year></year>
</nlm-citation>
</ref>
<ref id="B65">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Vatne]]></surname>
<given-names><![CDATA[T. M.]]></given-names>
</name>
<name>
<surname><![CDATA[Helmen]]></surname>
<given-names><![CDATA[I. O.]]></given-names>
</name>
<name>
<surname><![CDATA[Bahr]]></surname>
<given-names><![CDATA[D.]]></given-names>
</name>
<name>
<surname><![CDATA[Kanavin]]></surname>
<given-names><![CDATA[O.]]></given-names>
</name>
<name>
<surname><![CDATA[Nyhus]]></surname>
<given-names><![CDATA[L.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA["She came out of mum's tummy the wrong way". (Mis)conceptions among siblings of children with rare disorders]]></article-title>
<source><![CDATA[Journal of Genetic Counseling]]></source>
<year>2015</year>
<volume>24</volume>
<numero>2</numero>
<issue>2</issue>
<page-range>247-58</page-range></nlm-citation>
</ref>
<ref id="B66">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Vitale]]></surname>
<given-names><![CDATA[S. A.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Parent recommendations for family functioning with prader-willi syndrome: A rare genetic cause of childhood obesity]]></article-title>
<source><![CDATA[Jornal de Enfermagem Pediátrica]]></source>
<year>2015</year>
<volume>31</volume>
<numero>1</numero>
<issue>1</issue>
<page-range>47-54</page-range></nlm-citation>
</ref>
<ref id="B67">
<nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Wierzba]]></surname>
<given-names><![CDATA[J.]]></given-names>
</name>
<name>
<surname><![CDATA[Mazurkiewicz-Be&#322;dzi&#324;ska]]></surname>
<given-names><![CDATA[H.]]></given-names>
</name>
<name>
<surname><![CDATA[Jablonska-Brud&#322;o]]></surname>
<given-names><![CDATA[J.]]></given-names>
</name>
<name>
<surname><![CDATA[Pota&#380;]]></surname>
<given-names><![CDATA[P.]]></given-names>
</name>
<name>
<surname><![CDATA[Banach]]></surname>
<given-names><![CDATA[P.]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Challenges of caring for a patient with a rare disease: as demonstrated by Cornelia de Lange Syndrome]]></article-title>
<source><![CDATA[Developmental Period Medicine]]></source>
<year>2015</year>
<volume>19</volume>
<numero>4</numero>
<issue>4</issue>
<page-range>511-5</page-range></nlm-citation>
</ref>
</ref-list>
</back>
</article>
