Rare clotting factor deficiencies
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The Many Faces of Bleeding Disorders
This video podcast celebrates the whole bleeding disorders community – people with hemophilia and symptomatic carriers, females and males with von Willebrand disease, as well as those with rarer factor deficiencies, and inherited platelet disorders. More videos
Rare Coagulation Disorders Resource Room
Hemophilia A and B are defined as rare disorders, affecting about 1 in 10,000 people worldwide. Yet even less common bleeding and clotting disorders exist worldwide, and knowledge about these conditions and their management lags far behind. These very rare and heterogeneous disorders are the focus of a new online resource – the Rare Coagulation Disorders Resource Room.
The Resource Room, a dynamic, open-access website, was developed through a collaboration of the international RBDD Registry, the Indiana Hemophilia & Thrombosis Center, and the Rare Coagulation Disorders Subcommittee of the National Hemophilia Foundation (NHF), a group appointed by NHF’s Medical and Scientific Advisory Council.
The Resource Room serves as a platform for promoting international collaboration to increase knowledge of these very rare disorders and to improve the care of affected individuals.
National Hemophilia Foundation Rare Bleeding and Clotting Disorders Resource Center
This special issue of Hemophilia was conceived by a subcommittee of the Medical and Scientific Advisory Council of the National Hemophilia Foundation in an effort to begin to address the needs of patients with rare bleeding and clotting disorders and their caregivers. This compendium of review articles includes papers on all the rare factor deficiencies (listed below), platelet defects, as well as thrombotic disorders such as Protein C, Protein S, and alpha-2 antiplasmin deficiencies.
Local hemophilia organizations and treatment centres can provide additional information and support. Search our online directory to find the group nearest you.
Updated December 2013