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This website arises from the project "European Network of Rare Bleeding Disorders (EN-RBD)" funding from the European Union, Public Health Programme. | | | | | University-of-Milan | European-Commission | | | |
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Last Updated ( Thursday, 11 February 2010 17:21 )
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Annual workshop of the EN-RBD working group will be held in Athens, Greece on january 16th 2010 download PROGRAMME  PROGRAMME
SESSION 1. State of the art of the EN-RBD project
CHAIRS : Flora Peyvandi and Helen Pergantou
Management of the EN- RBD project
Silvia Malosio, SMC – Servizi Media, Milan, Italy
EN- RBD project : results and expectations
Flora Peyvandi – University of Milan, Italy SESSION 2. Update on National Database/Registry in Europe and proposals for future stepsCHAIRS : Ruth Gilmore and Majda Benedik Dolnicar
Greece: Helen Pergantou
Germany: Susan Halimeh
I reland: Ruth Gilmore
Turkey: Tiraje Celkan
UK: Paul Giangrande
Serbia: Danijela Mikovic
Slovenia: Majda Benedick Dolnicar SESSION 3. Supports and collaborationsCHAIRS : Paul Giangrande
EU Public Health Programme
European Union Public Health Agency
Ethics issue in the UK and the EUHASS project
Mike Makris - Royal Hallamshire Hospital, Sheffield, UK US registry and EN-RBD database: how to collaborate
Diane Aschman - President and CEO American Thrombosis and
Hemostasis Network SESSION 4. ROUNDTABLE : The future of the EN-RBD database CHAIRS : Flora Peyvandi
Which is the future for this project? CONCLUSIONS
Flora Peyvandi |
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the new release of the database has been released on october 12 2009 - the Bleeding Score section has been totally revised on the basis of a Bleeding Score new model The network objective now is to complete all the current data and enter more patients in order to obtain data analysis in time for our next workshop on January 15th. |
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On July 11-16, 2009, the XXII Congress of the International Society of Thrombosis and Haemostasis (ISTH) was held in Boston, MA, USA.
Prof. Flora Peyvandi, from the University of Milan, presented the state of the art of the European Network of Rare Bleeding Disorders (EN-RBD) project during the Scientific and Standardization Committee (SSC) on Factor VIII and Factor IX Moreover Dr. Marzia Menegatti, from the University of Milan, presented the preliminary results obtained by the analysis of information on 608 patients entered in the EN-RBD database during the Abstract Symposium “Women and bleeding disorders: New perspectives” Presentation Prof Flora Peyvandi, on behalf of Dr Simona Maria Siboni, presented the results of the project on Central Nervous System (CNS) bleeding in patients affected by rare bleeding disorders (RBDs) Presentation
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Last Updated ( Thursday, 23 July 2009 07:45 )
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