Related Online Resource: Rare Coagulation Disorders Resource Room
Wednesday, November 20, 2013
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
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
Find more ISTH-related online resources here.