Blood Transfusion Supplement 3 - Haemophilia Centre Accreditation Systems and Networks of Centres of Expertise for Rare Diseases in Europe and North America (off subscription)
 
Preface
Preface
Claudio Velati
Editorial
Haemophilia Centre Certification Systems: optional or optimal choice for healthcare systems?
Gabriele Calizzani, Michael Makris, Pier Mannuccio Mannucci, Domenica Taruscio, Giuliano Grazzini, Fabrizio Oleari
Review
Haemophilia Centre certification system across Europe: the Belgian experience
Cedric Hermans
Original article
Quality of haemophilia care in the Netherlands: new standards for optimal care
Frank W.G. Leebeek, Kathelijn Fischer
A certification/accreditation model for Haemophilia Centres in Italy
Pier Mannuccio Mannucci, Ivana Menichini
The Italian institutional accreditation model for Haemophilia Centres
Gabriele Calizzani, Fabio Candura, Ivana Menichini, Romano Arcieri, Giancarlo Castaman, Alessandro Lamanna, Maria R. Tamburrini, Antonio Fortino, Monica Lanzoni, Samantha Profili, Simonetta Pupella, Giancarlo M. Liumbruno, Giuliano Grazzini
Review
The European Haemophilia Network (EUHANET)
Michael Makris, Gabriele Calizzani, Kathelijn Fischer, Alexander Gatt, Estelle Gilman, Robert Hollingsworth, Thierry Lambert, Riitta Lassila, Pier Mannuccio Mannucci, Flora Peyvandi, Jerzy Windyga
Original article
The methodology for defining the European Standards for the certification of Haemophilia Centres in Europe
Fabio Candura, Ivana Menichini, Gabriele Calizzani, Paul Giangrande, Pier Mannuccio Mannucci, Michael Makris
The European standards of Haemophilia Centres
Paul Giangrande, Gabriele Calizzani, Ivana Menichini, Fabio Candura, Pier Mannuccio Mannucci, Michael Makris
Review
The haemophilia certification system in Canada
Davide Matino, Jerry Teitel, David Page, Arun Keepanasseril, Alfonso Iorio, Irwin Walker
The National Haemophilia Program Standards, Evaluation and Oversight Systems in the United States of America
Mark W. Skinner, J. Michael Soucie, Kathryn McLaughlin
Institutional accreditation of Health Services in Italy: the long road to quality
Antonio Fortino, Francesco Di Stanislao
Current and evolving features in the clinical management of haemophilia
Antonio Coppola, Massimo Morfini,, Ernesto Cimino, Antonella Tufano, Anna M. Cerbone, Giovanni Di Minno
Uncovered needs in the management of inherited bleeding disorders in Italy
Romano Arcieri, Angelo C. Molinari, Stefania Farace, Giuseppe Mazza, Alberto Garnero, Gabriele Calizzani, Paola Giordano, Emily Oliovecchio, Lorenzo Mantovani, Lamberto Manzoli, Paul Giangrande
Original article
The social burden and quality of life of patients with haemophilia in Italy
Yllka Kodra, Marianna Cavazza, Arrigo Schieppati, Marta De Santis, Patrizio Armeni, Romano Arcieri, Gabriele Calizzani, Giovanni Fattore, Lamberto Manzoli, Lorenzo Mantovani, Domenica Taruscio
Current status of Italian Registries on inherited bleeding disorders
Hamisa Jane Hassan, Massimo Morfini, Domenica Taruscio, Francesca Abbonizio, Adele Giampaolo, Yllka Kodra, Emily Oliovecchio, Luciano Vittozzi
Original article
Definition of an organisational model for the prevention and reduction of health and social impacts of inherited bleeding disorders
Gabriele Calizzani, Ivana Menichini, Fabio Candura, Monica Lanzoni, Samantha Profili, Maria Rita Tamburrini, Antonio Fortino, Stefania Vaglio, Giuseppe Marano, Giuseppina Facco, Emily Oliovecchio, Massimo Franchini, Antonio Coppola, Romano Arcieri, Cinzia Bon, Mario Saia, Sabina Nuti, Massimo Morfini, Giancarlo M. Liumbruno, Giovanni Di Minno, Giuliano Grazzini
Review
The Italian National Centre for Rare Diseases: where research and public health translate into action
Domenica Taruscio, Linda Agresta, Annalisa Amato, Giuseppe Bernardo, Luana Bernardo, Francesca Braguti, Pietro Carbone, Claudio Carta, Marina Ceccarini, Federica Censi, Simona Coppola, Patrizia Crialese, Marta De Santis, Stefano Diemoz, Carlo Donati, Sabina Gainotti, Gianluca Ferrari, Giovanna Floridia, Claudio Frank, Rosa Giuseppa Frazzica, Amalia E. Gentile, Orietta Granata, Yllka Kodra, Manuela Latrofa, Paola Laricchiuta, Armando Magrelli, Cristina Morciano, Agata Polizzi, Stefania Razeto, Marco Salvatore, Antonella Sanseverino, Daniele Savini, Paola Torreri, Fabrizio Tosto, Flavia Villani, Giorgio Vincenti, Luciano Vittozzi
Original article
The Italian National Rare Diseases Registry
Domenica Taruscio, Yllka Kodra, Gianluca Ferrari, Luciano Vittozzi and the National Rare Diseases Registry Collaborating Group
Review
The Italian National Plan for Rare Diseases
Maria Elena Congiu
Piedmont and Aosta Valley inter-regional network in the context of the Italian National Network for rare diseases
Simone Baldovino, Elisa Menegatti, Vittorio Modena, Maria Maspoli, Flavia Avanzi, Dario Roccatello
Original article
Centres of Expertise and European Reference Networks: key issues in the field of rare diseases. The EUCERD Recommendations.
Domenica Taruscio, Amalia E. Gentile, Teresinha Evangelista, Rosa G. Frazzica, Kate Bushby, Antoni Moliner Montserrat
Letter to the Editor
European Reference Networks for rare diseases: the vision of patients
Terkel Andersen, Yann Le Cam, Ariane Weinman

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