RBDD database
Since 1996 the Angelo Bianchi Bonomi Haemophilia and Thrombosis Centre (http://www.bianchibonomi-htcenter.it), IRCCS Foundation Maggiore Hospital, Mangiagalli, Regina Elena (http://www.policlinico.mi.it), Luigi Villa Foundation (http://www.fondazioneluigivilla.org) and University of Milan (http://www.unimi.it) have been collecting information and developing international collaborations across the RBDs network, becoming an International reference point. In the last ten years we have investigated more than 400 patients with RBDs from a variety of countries (Figure 4 ). The continuing collaboration with different international centres will allow to further extend the knowledge of RBDs and give a platform to focus and develop further diagnostic and therapeutic research activity.
In 2004, during the 50th Scientific and Standardisation Committee (SSC) meeting organized by the International Society of Thrombosis and Haemostasis and held in Venice, a SSC working group on "Rare Bleeding Disorders" (RBDs) was established within the framework of the FVIII/IX subcommittee. The aim of this group is to initially collect data on RBDs from various clinicians and researchers engaged in this field. The main goals of the RBD working group are:
-	To establish and implement an International Database of RBDs. Contributions to this database will allow a comprehensive analysis of the distribution of patients affected by RBDs in each region of the world. This data collection will increase our knowledge on the clinical and therapeutic aspects of RBDs
-	Identification of available drugs for replacement therapy of each very rare bleeding disorder in different regions of the world. The work of this group will help to constantly follow (overhaul) drug production, cost and distribution in the world and mainly to encourage the development of drugs particularly for those deficiencies with no available therapeutic concentrate.
With these goals, an on-line International Database on RBDs (RBDD, www.rbdd.org) was developed with the aim of efficiently collecting and extracting already available data on RBDs. The conceptual schema of RBDD (Figure 5) was designed thanks to the collaboration of molecular, clinical and informatic expertises. Currently the database contains clinical, genetic and therapeutic information on a large group of severely affected patients scattered in various parts of the world. By creating a network of the Haemophilia Centres around the World, we believe that RBDD should represent a reference informative tool where knowledge and expertise on RBDs could be collected and shared. The knowledge extracted from RBDD will allow optimisation of retrospective studies; whereas further studies are needed to ameliorate current treatments and diagnosis.
Thus the final goal is to provide evidence-based guidelines for diagnosis and management of patients affected by RBDs, coming from an unique International database formed by the implementation of all the pre-existing databases and managed by a scientific International organization, such as ISTH or WFH.