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Related Online Resource: Rare Coagulation Disorders Resource Room

Wednesday, November 20, 2013   (0 Comments)
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he Rare Coagulation Disorders Resource Room (www.rarecoagulationdisorders.org), a dynamic, open-access website, was developed through a collaboration of the international RBDD Registry (http://www.rbdd.org/), the Indiana Hemophilia & Thrombosis Center (www.ihtc.org), and the Rare Coagulation Disorders Subcommittee of the National Hemophilia Foundation (NHF, www.hemophilia.org), a group appointed by NHF’s Medical and Scientific Advisory Council. The Resource Room 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 and heterogeneous coagulation disorders.

This website was created to address the needs of both individuals with rare coagulation disorders and their health care providers. Health care professionals often have little experience treating these disorders, with limited resources for their diagnosis and treatment. Moreover, as rare coagulation disorders represent a small potential commercial market, few, if any, specific therapies exist for these conditions. As a result, affected individuals often face delayed diagnosis, insufficient laboratory evaluation, and limited treatment options.

Find more ISTH-related online resources here.


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