CIVIL SOCIETY AND RARE DISEASES

Rare diseases are often neglected from both health systems and research. The situation for patients and families is characterized by difficulties not only to receive adequate medical care, but also to get a necessary psychosocial support. However, remarkable positive changes are taking place, such a...

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Detalles Bibliográficos
Autor: Serrano M
Tipo de recurso: artículo
Estado:Versión publicada
Fecha de publicación:2018
País:España
Institución:Fundació Sant Joan de Déu
Repositorio:r-FSJD. Repositorio Institucional de Producción Científica de la Fundació Sant Joan de Déu
OAI Identifier:oai:fsjd.fundanetsuite.com:p15591
Acceso en línea:https://fsjd.fundanetsuite.com/Publicaciones/ProdCientif/PublicacionFrw.aspx?id=15591
Access Level:acceso abierto
Palabra clave:Rare diseases
empowerment
orphan drugs
patient societies
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spelling CIVIL SOCIETY AND RARE DISEASESSerrano MRare diseasesempowermentorphan drugspatient societiesRare diseases are often neglected from both health systems and research. The situation for patients and families is characterized by difficulties not only to receive adequate medical care, but also to get a necessary psychosocial support. However, remarkable positive changes are taking place, such as the growing presence of rare diseases as a group in national and international policies, the changing roles of patients, physicians and researchers and their mutual relations, increasing awareness and social involvement, greater opportunities for dissemination and awareness and the current favourable communications and technological environment. The complexity of these changes and the responsibilities that each group of stakeholders should take in this new framework is controversial and questions of an ethical nature are arising. These are often difficult to answer and the role adopted by the different agents can be explained by their pressing needs.CONSEJO SUPERIOR INVESTIGACIONES CIENTIFICAS-CSIC2018info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionhttps://fsjd.fundanetsuite.com/Publicaciones/ProdCientif/PublicacionFrw.aspx?id=15591ARBOR-CIENCIA PENSAMIENTO Y CULTURAISSN: 02101963ISSNe: 1988303Xreponame:r-FSJD. Repositorio Institucional de Producción Científica de la Fundació Sant Joan de Déuinstname:Fundació Sant Joan de DéuEspañolinfo:eu-repo/semantics/openAccessoai:fsjd.fundanetsuite.com:p155912026-05-27T12:37:41Z
dc.title.none.fl_str_mv CIVIL SOCIETY AND RARE DISEASES
title CIVIL SOCIETY AND RARE DISEASES
spellingShingle CIVIL SOCIETY AND RARE DISEASES
Serrano M
Rare diseases
empowerment
orphan drugs
patient societies
title_short CIVIL SOCIETY AND RARE DISEASES
title_full CIVIL SOCIETY AND RARE DISEASES
title_fullStr CIVIL SOCIETY AND RARE DISEASES
title_full_unstemmed CIVIL SOCIETY AND RARE DISEASES
title_sort CIVIL SOCIETY AND RARE DISEASES
dc.creator.none.fl_str_mv Serrano M
author Serrano M
author_facet Serrano M
author_role author
dc.subject.none.fl_str_mv Rare diseases
empowerment
orphan drugs
patient societies
topic Rare diseases
empowerment
orphan drugs
patient societies
description Rare diseases are often neglected from both health systems and research. The situation for patients and families is characterized by difficulties not only to receive adequate medical care, but also to get a necessary psychosocial support. However, remarkable positive changes are taking place, such as the growing presence of rare diseases as a group in national and international policies, the changing roles of patients, physicians and researchers and their mutual relations, increasing awareness and social involvement, greater opportunities for dissemination and awareness and the current favourable communications and technological environment. The complexity of these changes and the responsibilities that each group of stakeholders should take in this new framework is controversial and questions of an ethical nature are arising. These are often difficult to answer and the role adopted by the different agents can be explained by their pressing needs.
publishDate 2018
dc.date.none.fl_str_mv 2018
dc.type.none.fl_str_mv info:eu-repo/semantics/article
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url https://fsjd.fundanetsuite.com/Publicaciones/ProdCientif/PublicacionFrw.aspx?id=15591
dc.language.none.fl_str_mv Español
language_invalid_str_mv Español
dc.rights.none.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.publisher.none.fl_str_mv CONSEJO SUPERIOR INVESTIGACIONES CIENTIFICAS-CSIC
publisher.none.fl_str_mv CONSEJO SUPERIOR INVESTIGACIONES CIENTIFICAS-CSIC
dc.source.none.fl_str_mv ARBOR-CIENCIA PENSAMIENTO Y CULTURA
ISSN: 02101963
ISSNe: 1988303X
reponame:r-FSJD. Repositorio Institucional de Producción Científica de la Fundació Sant Joan de Déu
instname:Fundació Sant Joan de Déu
instname_str Fundació Sant Joan de Déu
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collection r-FSJD. Repositorio Institucional de Producción Científica de la Fundació Sant Joan de Déu
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