For clinicians and researchers:
Data on RBDs (including F5F8D) are still incomplete and limited, particularly from affected individuals in developing countries,due to biological heterogeneity and variable presentation. In recent years, attempts to respond to this critical lack of information through the creation of registries or databases have been made. Some of these databases are available online and report information on F5F8D:
For patients:
Several centers offer phenotypic and genetic diagnostic services for rare coagulation deficiencies. These centers additionally provide medical management of both adult and pediatric patients affected with F5F8D. The European Haemophilia Network (EUHANET), after an extensive consultation with physicians and other experts, produced a set of guidelines for the designation of European Hemophilia Centers as Comprehensive Care Centers (EHCCC) or Treatment Centers (EHTC). A map of the Certification of European Haemophilia Centres can be retrieved at http://www.euhanet.org/MappedCentres.aspx.
The WFH website hosts the Global Treatment Centre Directory (https://www.wfh.org/en/page.aspx?pid=1264), which is a useful resource for people who are seeking diagnosis. National member organizations that represent the interests of their citizens with hemophilia or other bleeding disorders may also be found here. Links to patient organizations may also be found by searching the Orphanet website (http://www.orpha.net/consor/cgi-bin/index.php).
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.
