27 January 2009
European Haemophilia Consortium, in collaboration with the European Association for Haemophilia and Allied Disorders (EAHAD) will launch the
European Principles of Haemophilia Care in the European Parliament
Professor Flora Peyvandi, University of Milan, presented the Rare Bleeding Disorders
Database, which gathers data on Rare Bleeding Disorders (RBD) from various clinicians and
researchers engaged in this field and is funded for three years by the European Commission.
She explained that the lack of homogenous data on products, treatments and expertise
available does not facilitate the spread of scientific knowledge across the rare bleeding
disorder community. Through the RBD database, each EU centre can share their experiences
and data online and obtain concrete results such as a comprehensive analysis of the
distribution of patients affected by RBDs or establishing patterns for the frequencies of
bleedings. This could allow coming up with guidelines for the treatment of RBDs and could
help pharmaceutical companies to know how to plan their production of products.
She called for a legislative framework that encourages research and development in the
bleeding disorder field, as well as a long term and sustainable support from the EU
community for her project, since it only last 3 years, just the amount of time for a
programme to start bearing fruit.
www.rbdd.eu
www.ehc.eu
