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

About Rare Coagulation Disorders Resource Room

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 (https://ihtc.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.


Rare Congenital Disorders of Fibrinogen

Suchitra S. Acharya, MD &
Marilyn J. Manco-Johnson, MD

(Factor II) Deficiency

Glaivy Batsuli, MD &
Shannon L. Meeks, MD

Plasminogen Deficiency

Charles Nakar, MD,
Brandon Hardesty, MD,
Rakesh Mehta, MD &
Amy D. Shapiro, MD

Plasminogen Activator Inhibitor Type 1 Deficiency

Sweta Gupta, MD,
Whitney Sealls, PhD, &
Amy Shapiro, MD

Factor V Deficiency

Kristin Shimano, MD &
Marion Koerper, MD

Combined FV and FVIII Deficiency

Marzia Menegatti, PhD &
Flora Peyvandi, MD, PhD

Congenital Platelet Function Disorders

Jorge Di Paola MD, Thomas J. Kunicki PhD &
Diane J. Nugent MD

Alpha 2-Antiplasmin Deficiency

Shannon L. Carpenter MD, MS

Factor VII Deficiency

Mariasanta Napolitano, MD, PhD &
Guglielmo Mariani, MD

Factor X Deficiency

Deborah L. Brown, MD &
Peter A. Kouides, MD

Hereditary Hemorrhagic Telangiectasia

Raj S. Kasthuri, MBBS, MD

Factor XI Deficiency

Paula H. B. Bolton-Maggs, BMBCh, DM, FRCP, FRCPath

FXIII Deficiency

Diane J. Nugent, MD

Congenital Deficiency of Vitamin K-Dependent Clotting Factors

Yasmina L. Abajas, MD &
Paul E. Monahan, MD

Contact Information

Sonia Nasr, PhD