Flora Peyvandi - University of Milan

Rare disease events in Europe

source: Eurordis

Learning from each other across Europe

Norwegian-Romanian (NoRo) Partnership for Progress in Rare Diseases

After three years of intense work a new service for Romanian rare disease patients is set to open in June 2011. The pilot Centre for Rare Diseases and virtual Rare Disease Training E-University is the first of its kind in Romania and will encompass a day centre for rare disease patients with autistic behaviour, a respite care service and a comprehensive training programme.

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source: Eurordis

"Fostering international collaboration on rare diseases research: launch of the International Rare Disease Research Consortium (IRDiRC)"

Flora Peyvandi attended the meeting "Fostering international collaboration on rare diseases research: launch of the International Rare Disease Research Consortium (IRDiRC)" organized by the National Institutes of Health in Bethesda, April 5-8, 2011. She made a presentation on the experience of the EN-RBD network and on the collaboration with the American Thrombosis and Hemostasis Network (ATHN).

http://www.eurunion.org

Hemophilia 2010 Congress

The Hemophilia 2010 World Congress will be held in Buenos Aires, Argentina, from Saturday, July 10 to Wednesday, July 14, 2010

www.hemophilia2010.org

21st International Congress on Thrombosis 2010

Milan, July 6-9, 2010

www.thrombosis2010.org

56th Scientific and Standardization Committee (SSC) meeting of the International Society on Thrombosis and Haemostasis (ISTH)

On May 22-25, 20010, 56th Scientific and Standardization Committee (SSC) meeting was held inCairo, Egypt .

Prof. Flora Peyvandi, from the University of Milan, presented the progresses of the European Network of Rare Bleeding Disorders (EN-RBD) project and the preliminary results obtained using a bleeding score system, specifically designed for RBDs, during the

Scientific and Standardization Committee (SSC) on Factor VIII and Factor IX

Scientific and Standardization Committee (SSC) on von Willebrand factor

Moreover Prof. Flora Peyvandi presented data on miscarriages in women affected with RBDs, during the

Scientific and Standardization Committee (SSC) on Women

International Congress RARE DISEASES AND ORPHAN DRUGS

Istituto Superiore di Sanità Roma, Italy

22nd – 25th February 2010

Flora Peyvandi presented the state of the art of the EN-RBD project and the progress in the development of the Italian registry on RBDs in collaboration with the Italian association of Haemophilia Centres (AICE)

Programme

Abstract

3nd Annual Congress of European Association for Haemophilia and Allied Disorders (http://www.eahad2010.org/)

Edinburgh International Conference Centre
Edinburgh, Scotland

3rd – 5th February 2010

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 and the results showed at the recent EN-RBD workshop, held in Athens on 16 th January.

Moreover Professor Peyvandi, made a presentation on treatment of RBDs, particularly focused on FX and FV deficiencies, explaining how it is important to develop treatment products specific for these deficiencies

Abstract EAHAD congress

2009/2010

Visiting Professor of University College London (UCL)

UCL and Royal Free Hospital (RFH), Haemostasis Research Unit, Department
Of Haematology, UCL, London-UK

www.ucl.ac.uk/ haemostasis/hru-staff.htm

2009

ISTH 2009

XXII Congress of The International Society on Thrombosis and Haemostasis July 11-16 2009 Boston U.S.A.

external link

ISTH 2009

XXII Congress of The International Society on Thrombosis and Haemostasis

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

European Symposium on “Optimal Clinical Use of Blood Components”
April 24th-25th 2009, Wildbad Kreuth, Germany

Clotting factor concentrates and haemophilia treatment

Rare bleeding disorders - Flora Peyvandi presentation

download the program

15th International Meeting of Danubian League Against Thrombosis and Haemorrhagic Disorders

Belgrade, May 14–16, 2009

danubianleaguebelgrade.com

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

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

Program

2008

3rd December 2008
"Rare Diseases and Disabilities. We are rare but numerous"
A meeting organized by the G.Dossetti Association and held at the Senate Palace, Campidoglio Square, Rome, under the auspices of the Ministry of Welfare, Health and Social Policies, the Italian National Istitute of Health, numerous scientific societies, drug industry associations and local authorities.
This has been an important occasion for patients associations, political authorites, medical doctors, researchers and drug industries to meet and join forces to attract more interest and funding into rare diseases.
In this framework, Flora Peyvandi presented the current project on rare bleeding disorders and promoted the need for a National Registry, for a cooperation with the industries at an international level.

videoclip