International Rare Bleeding Disorders Database

Dr. Flora Peyvandi, under the auspices of the International Society of Thrombosis and Haemostasis, has spearheaded the development of an international network of care providers and national representatives to work together to discuss the prevalence, clinical manifestations, and need for coordinated and consistent data collection. The hope of this international community is to better identify the number of affected individuals throughout the world, define the clinical manifestations and sequelae associated with these disorders, create a network of individuals who care for these patients that are able to share diagnostic and treatment expertise, and provide potential centers where specific products once developed may be utilized in clinical trials. Since 1996 the RBDD Group have been collecting information and developing international collaborations across the RBDs network, becoming an International reference point. In the last ten years more than 400 patients with RBDs from a variety of countries were investigated. 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.