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2009 |
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| EHA CONGRESS 2009 |
On June 4-7, 2009, the 14TH Congress of the European Society of Hematology (EHA) was held in Berlin, Germany.
Dr. Roberta Palla, from the University of Milan, presented the state of the art of the European Network of Rare Bleeding Disorders (EN-RBD) project |
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ISTH 2009
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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| European Council Recommendation on Rare Diseases |
European Council Recommendation on Rare Diseases adopted
EURORDIS welcomes the final adoption by the European Council on June 9th, 2009, of the proposed Council Recommendation on European Action in the field of Rare Diseases. The Council Recommendation represents an important milestone for rare disease patients all over Europe.
Read more  |
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European Symposium on “Optimal Clinical Use of Blood Components”
April 24th-25th 2009, Wildbad Kreuth, Germany
Professor Flora Peyvandi presented indications for treatment of rare bleeding disorders.
program
presentation
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| Rare diseases: an invisible threat |
Public health - 23-04-2009
Rare diseases contribute heavily to the death rate in Europe but often go unrecorded owing to weaknesses in healthcare data systems. Concerted action at EU and national level is needed to tackle this problem, according to a report adopted by Parliament today in Strasbourg.
There are between 5,000 and 10,000 rare diseases, with a total number of sufferers ranging between 27 and 36 million people.
Parliament adopted an amendment today which recommends that Member States encourage efforts to avoid rare diseases which are hereditary, through genetic counselling of carrier parents...
http://www.europarl.europa.eu/news/ |
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| 15th International Meeting of Danubian Laegue Against Thrombosis and Haemorrhagic Disorders
Belgrade, May 14–16, 2009
danubianleaguebelgrade.com |
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| the 3rd Annual workshop of the EN-RBD working group have been planned to be held in Athens, Greece 18/19 september 2009 |
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2 nd Annual EAHAD Congress,
Munich Cultural Centre (Gasteig); Munich - Germany
26 th – 27 th February 2009
Professor Flora Peyvandi, on behalf of the European Network on Rare Bleeding Disorders (EN-RBD), presented the state of the art of the EN-RBD project, during the second congress of the European Association for Haemophilia and Allied Disorders (EAHAD).
presentation 
EAHAD Munich Program |
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| EPPOSI Workshop
March 2009
EPPOSI Workshop on Patients Registries for Rare DisordersNeed for data collection to increase knowledge on rare disorders and optimize disease management and care
Wednesday 18 – Thursday 19 March 2009
Scientific Institute of Public Health
Brussels, Belgium |
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Rare Disease Day 2009
February 28
http://www.rarediseaseday.org/ |
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