No current clinical trials are ongoing in this field. No specific replacement therapy has been developed for this very rare condition. Referral to a hematologist is recommended when this diagnosis is suspected.
Researchers specializing in rare bleeding disorders:
Amy Shapiro, MD
Medical Director
Indiana Hemophilia & Thrombosis Center
Indianapolis, IN
ashapiro@ihtc.org
Flora Peyvandi, MD, PhD
Associate Professor of Internal Medicine
Angelo Bianchi Bonomi Hemophilia and Thrombosis Center
University of Milan
Milan, Italy
flora.peyvandi@unimi.it
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.
