The U.S. National Hemophilia Foundation (www.hemophilia.org) offers information on various bleeding and clotting disorders for patients and families.
Orphanet (www.orpha.org) is a portal for information about rare diseases and orphan drugs and provides information on fibrinogen deficiencies (search term “Fibrinogen”).
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.
