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.
In the last ten years we have investigated patients with RBDs from a variety of countries
EN-RBD database 2.0 european registry