Welcome to the Rare Coagulation Disorders Resource Room
A platform to promote international collaboration to increase knowledge of these very rare disorders and to improve the care of affected individuals
A platform to promote international collaboration to increase knowledge of these very rare disorders and to improve the care of affected individuals
The Rare Coagulation Disorders Resource Room (https://rarecoagulationdisorders.org/), a dynamic, open-access website, was developed through a collaboration of the international RBDD Registry (https://rbddorg.serversicuro.it/014/), and the Indiana Hemophilia & Thrombosis Center (www.innovativehematology.org), in conjunction with the many contributing authors from around the world.
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.
Suchitra S. Acharya, MD &
Marilyn J. Manco-Johnson, MD
Glaivy Batsuli, MD &
Shannon L. Meeks, MD
Charles Nakar, MD,
Brandon Hardesty, MD,
Rakesh Mehta, MD &
Amy D. Shapiro, MD
Sweta Gupta, MD,
Whitney Sealls, PhD, &
Amy Shapiro, MD
Kristin Shimano, MD &
Marion Koerper, MD
Marzia Menegatti, PhD &
Flora Peyvandi, MD, PhD
Jorge Di Paola MD, Thomas J. Kunicki PhD &
Diane J. Nugent MD
Shannon L. Carpenter MD, MS
Mariasanta Napolitano, MD, PhD
&
Guglielmo Mariani, MD
Deborah L. Brown, MD &
Peter A. Kouides, MD
Raj S. Kasthuri, MBBS, MD
Paula H. B. Bolton-Maggs, BMBCh, DM, FRCP, FRCPath
Diane J. Nugent, MD
Yasmina L. Abajas, MD &
Paul E. Monahan, MD
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.
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