Hemophilia A and B are classified as rare disorders in the United States, affecting fewer than 200,000 individuals. Even rarer bleeding and clotting disorders, often referred to as rare or ultra‑rare coagulation disorders, affect far fewer people worldwide and remain poorly understood due to limited clinical experience and gaps in research. As a result, individuals living with these conditions often face delayed diagnosis and limited treatment options.
The Rare Coagulation Disorders Resource Room is a free, open‑access educational website that provides expert‑reviewed information on rare coagulation disorders and is updated regularly to reflect advances in knowledge and care. It offers searchable content covering basic science, clinical management, laboratory and genetic testing, clinical trials, and global research efforts. The Resource Room was developed through collaboration among the international RBDD Registry, Innovative Hematology (previously known as the Indiana Hemophilia & Thrombosis Center), and the Rare Coagulation Disorders Subcommittee of the Medical and Scientific Advisory Council of the National Bleeding Disorders Foundation at the time. Content was written by international experts and reflects updated and reorganized material originally published in the 2008 Haemophilia supplement.
While educational resources are essential, progress in rare disorders depends on data, and data depend on people. For individuals living with rare or ultra‑rare bleeding disorders, sharing their lived experience through Community Voices in Research (CVR) is critical to strengthening the evidence base. CVR is a community‑powered registry that transforms lived experience into evidence, improving understanding of real‑world outcomes and ensuring research reflects the full diversity of the bleeding disorders community.
Together, educational resources like the Resource Room and patient‑contributed data through CVR support global efforts to advance research, improve care, and enhance quality of life for people living with rare coagulation disorders.
Explore the Rare Coagulation Disorders Resource Room.
Rare Coagulation Disorders Subcommittee of the National Bleeding Disorders Foundation
| Suchitra S. Acharya, MD Hemostasis and Thrombosis Center Northwell Health New Hyde Park, NY, United States | Marilyn Manco-Johnson, MD Hemophilia and Thrombosis Center University of Colorado, Aurora, CO, United States |
| Craig M. Kessler, MD Comprehensive Hemophilia and Thrombophilia Treatment Center Georgetown University Lombardi Cancer Center Washington, DC, United States | Diane J. Nugent, MD CHOC Children’s Hospital UC Irvine Medical Center Medical Center Orange, CA, United States |
| Marion A. Koerper, MD UCSF Children’s Hospital San Francisco, CA, United States | Amy D. Shapiro, MD Innovative Hematology Indianapolis, IN, United States |