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.

Her presentation can be downloaded here italian only

European Principles of Haemophilia Care (EHC/EAHAD)

27 January 2009

Flora Peyvandi has been invited to the European Parliament as a representative of the EN-RBD network

European Principles of Haemophilia Care in the European Parliament...

Annual workshop of the EN-RBD working group will be held in Copenhagen, Denmark on 16th December 2008

XXVIII International Congress of the World Federation of Haemophilia (WFH)

1 th – 5 th June, 2008, Istanbul, Turkey

29 February 2008: First European Rare Disease Day
The organisation of this awareness Day is coordinated by Eurordis at the European level and by National Alliances at the national level. Many events will take place throughout Europe. The Rare Disease Day will happen every year from 2008 onward.