RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases (Articolo in rivista)

Type

• Articolo in rivista (Classe)
• Prodotto della ricerca (Classe)

Label

• RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases (Articolo in rivista) (literal)

Anno

• 2014-01-01T00:00:00+01:00 (literal)

Alternative label

• Domenica Taruscio1, Cristina Morciano1, Paola Laricchiuta1, Pierpaolo Mincarone2, Fabio Palazzo2 , Carlo G. Leo2, Saverio Sabina2, Roberto Guarino2, Joanne Auld3, Thomas Sejersen4, Desirée Gavhed4, Karen Ritchie5, Michele Hilton-Boon5, Jan Manson5, Panos G. Kanavos6, Elena Nicod6, David Tordrup6, Aris Angelis6, Yann Le Cam7, Mon- ica Ensini7, Juliette Senecat7, Graziella Filippini8, Silvia Minozzi8, Cinzia Del Giovane8, Holger Schünemann9, Joerg J. Meerpohl9, Barbara Prediger9, Lisa Schell9, Rumen Stefanov10, Georgi Iskrov10, Tsonka Miteva-Katrandzhieva10, Pedro Serrano-Aguilar11, Lilisbeth Perestelo-Perez11, Maria M. Trujillo-Martín11, Jeanette Pérez-Ramos11, Amado Rivero-Santana11, Angela Brand12, Jonathan Lal12, Henk van Kranen12, Kate Bushby 13, Antonio Atalaia 13, Josè Ra- met14, Liesbeth Siderius 14, Manuel Posada 15, Ignacio Abaitua-Borda15, Veronica Alonso Ferreira15, Manuel Hens- Pérez15 (2014)
  RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases
  in Rare diseases and orphan drugs (Online)
  (literal)

Http://www.cnr.it/ontology/cnr/pubblicazioni.owl#autori

• Domenica Taruscio1, Cristina Morciano1, Paola Laricchiuta1, Pierpaolo Mincarone2, Fabio Palazzo2 , Carlo G. Leo2, Saverio Sabina2, Roberto Guarino2, Joanne Auld3, Thomas Sejersen4, Desirée Gavhed4, Karen Ritchie5, Michele Hilton-Boon5, Jan Manson5, Panos G. Kanavos6, Elena Nicod6, David Tordrup6, Aris Angelis6, Yann Le Cam7, Mon- ica Ensini7, Juliette Senecat7, Graziella Filippini8, Silvia Minozzi8, Cinzia Del Giovane8, Holger Schünemann9, Joerg J. Meerpohl9, Barbara Prediger9, Lisa Schell9, Rumen Stefanov10, Georgi Iskrov10, Tsonka Miteva-Katrandzhieva10, Pedro Serrano-Aguilar11, Lilisbeth Perestelo-Perez11, Maria M. Trujillo-Martín11, Jeanette Pérez-Ramos11, Amado Rivero-Santana11, Angela Brand12, Jonathan Lal12, Henk van Kranen12, Kate Bushby 13, Antonio Atalaia 13, Josè Ra- met14, Liesbeth Siderius 14, Manuel Posada 15, Ignacio Abaitua-Borda15, Veronica Alonso Ferreira15, Manuel Hens- Pérez15 (literal)

Http://www.cnr.it/ontology/cnr/pubblicazioni.owl#url

• http://rarejournal.org/rarejournal/article/view/38/52 (literal)

Http://www.cnr.it/ontology/cnr/pubblicazioni.owl#numeroVolume

• 1 (literal)

Rivista

• Rare diseases and orphan drugs (Rivista)

Http://www.cnr.it/ontology/cnr/pubblicazioni.owl#numeroFascicolo

• 1 (literal)

Http://www.cnr.it/ontology/cnr/pubblicazioni.owl#affiliazioni

• 1 National Centre for Rare Diseases, Istituto Superiore di Sanità, Rome (Italy), 2 Institute for Research on Population and Social Policies, National Re- search Council, Rome (Italy), 3 Jamarau, 4 Karolinska Institutet, 5 Healthcare Improvement Scotland, 6 London School of Economics and Political Science, 7 EURORDIS, European Organisation for Rare Diseases, 8 Associazione per la Ricerca sull'Efficacia dell'Assistenza Sanitaria Centro Cochrane Italiano, 9 University of Freiburg, 10 Bulgarian Association for Promotion of Education and Science, 11 Fundación Canaria de Investigación y Salud, 12 Universiteit Maastricht, 13 University of Newcastle Upon Tyne, 14 The European Academy of Paediatrics, 15 Institute of Rare Diseases Research, Instituto de Salud Carlos III (literal)

Titolo

• RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases (literal)

Abstract

• Over the last decade the European Union (EU) has been coordinating actions addressing various aspects of rare diseases and has funded several cross-border research projects. Recently the EU has initiated the biggest rare disease interna- tional collaborative effort by launching the International Rare Diseases Research Consortium (IRDiRC). RARE-Bestpractices is one of the more than 100 collaborative research projects on rare diseases funded under the Seventh Framework Programme for Research and Technological Development (FP7/2007-2013) [1]. As a wide, open and inclusive network, RARE-Bestpractices will build on the knowledge of the experts in rare disease (literal)

Prodotto di

• Health Technology Assessment (INT.P01.018.002) (Modulo)
• Istituto di fisiologia clinica (IFC) (Istituto)
• Istituto di ricerche sulla popolazione e le politiche sociali (IRPPS) (Istituto)

Autore CNR

• ROBERTO GUARINO (Persona)
• CARLO GIACOMO LEO (Unità di personale interno)
• PIERPAOLO MINCARONE (Persona)
• SAVERIO SABINA (Unità di personale interno)
• FABIO PALAZZO (Unità di personale interno)

Incoming links:

Prodotto

• Istituto di ricerche sulla popolazione e le politiche sociali (IRPPS) (Istituto)
• Istituto di fisiologia clinica (IFC) (Istituto)
• Health Technology Assessment (INT.P01.018.002) (Modulo)

Autore CNR di

• FABIO PALAZZO (Unità di personale interno)
• CARLO GIACOMO LEO (Unità di personale interno)
• SAVERIO SABINA (Unità di personale interno)
• PIERPAOLO MINCARONE (Persona)
• ROBERTO GUARINO (Persona)

Http://www.cnr.it/ontology/cnr/pubblicazioni.owl#rivistaDi

• Rare diseases and orphan drugs (Rivista)