Several international organizations have mechanisms and databases for data collection that offer general information on the various RBDs, provide epidemiologic information on RBDs, or establish committees of international experts to help define standardized guidelines for the management of individuals with RBDs. These ongoing efforts include the International Rare Bleeding Disorders Database project (www.rbdd.org), the World Federation of Hemophilia (WFH, www.wfh.org), and International Society on Thrombosis and Haemostasis (ISTH) Factor VIII, Factor IX and Rare Coagulation Disorders Scientific and Standardization Committee (SSC). Initiatives such as the ThromboGenomics project through the ISTH SSC aim to develop a comprehensive genetic database based on next-generation sequencing to help streamline the diagnosis of patients with rare bleeding and platelet disorders.45 These organizations and their services are summarized in the table below.
Rare Coagulation Disorders Resource Room, an extension of the RBDD Registry (eu.rbdd.org), was developed in collaboration with the Indiana Hemophilia & Thrombosis Center (www.innovativehematology.org).
The Resource Room serves as a platform to promote international collaboration to increase knowledge of these very rare disorders and to improve the care of affected individuals. The international RBDD mission, under the leadership of Dr. Peyvandi, will continue to be expanded over time.
The Resource Room thanks all contributing authors of the website articles that have made this valuable information available to the global community of both individuals affected with rare coagulation disorders and their healthcare providers.
