The National Hemophilia Foundation (NHF) is pleased to announce the launch of the online Rare Coagulation Disorders Resource Room. The new website, www.rarecoagulationdisorders.org, is a dynamic resource for individuals with rare coagulation disorders and their healthcare providers.
This website therefore provides current and searchable information on the basic science, clinical management, available laboratory and genetic testing, clinical trials, and global research initiatives for these very rare, difficult-to-manage disorders. For instance, on the new site users will find information on factor XI deficiency and combined factor V/factor VIII deficiency.
The international Rare Bleeding Disorders Database (RBDD) Registry, the Indiana Hemophilia & Thrombosis Center and the Rare Coagulation Disorders Subcommittee of NHF, a group appointed by NHF’s Medical and Scientific Advisory Council, all collaborated to develop this new resource room.