RBDD International Registry

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International Registry of Rare Bleeding Disorders (RBDs)

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goals of the Network

partner of the project

 

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Last Updated on Wednesday, 03 March 2010 13:31
 
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Rare Disease Day 2010

February 28

 

rdd09

 

www.rarediseaseday.org/ external link


 

Last Updated on Wednesday, 03 March 2010 13:39
 

Data and Information on Women's Health in the EU

 

 

This report provides an overview of women’s health issues across the EU and in EEA countries. It highlights gaps and special topics where research and more information are needed.

download.pdf

source: E.U Health and Consumers Directorate-General 

 

 

 

 

Last Updated on Wednesday, 17 February 2010 08:55
 
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3d workshop of the EN-RBD working group

Athens, Greece january 16th 2010

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 steps

CHAIRS : 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 collaborations

CHAIRS : 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

Last Updated on Wednesday, 17 February 2010 08:58
 

EN-RBD database 2.0

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the new release of the European Network RBD database has been released on october 12 2009

 the Bleeding Score section has been totally revised on the basis of a new study

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.

 

www.rbdd.eu

 

Last Updated on Wednesday, 21 October 2009 12:03