A global organization aiming to improve and sustain care for people with inherited bleeding disorders.
What is Congenital Fibrinogen Deficiency?
Congenital fibrinogen deficiency (CFD) is a rare inherited bleeding disorder that occurs when the body is unable to produce ample fibrinogen (also called Factor I) to help the body form blood clots to stop bleeding.
CFD is an umbrella term for several related disorders: Afibrinogenemia (a complete lack of fibrinogen), hypofibrinogenemia (low levels of fibrinogen), dysfibrinogenemia (fibrinogen does not work properly), and hypodysfibrinogenemia (a combined defect that involves both low levels of fibrinogen and impaired function). CSL Behring offers fibrinogen replacement therapies to help the body clot properly.
Emily’s Story: How Access to Care Changes Lives
This 13-year-old from Las Vegas is living with congenital afibrinogenemia, an ultra-rare hereditary bleeding disorder that the National Institutes of Health says affects 1 in 1 million newborns. People with the condition can suffer uncontrolled bleeding due to a missing factor in their blood.
Ten years after her family went to Washington, D.C. to successfully advocate for access to care, Emily is living the life of a typical American teen. Hear from Emily and learn more about her journey in this video.