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 fibrinogen (also called Factor I) levels are below 0.1 g/L.
CFD is an umbrella term for several related disorders: These include:
- Afibrinogenemia, the rarest form characterized by a complete absence of fibrinogen. It has an estimated prevalence of 1 in 1 million and is often identified shortly after birth, especially in regions where consanguineous marriages are common.
- Hypofibrinogenemia, which involves low levels of fibrinogen.
- Dysfibrinogenemia, where fibrinogen is present but doesn’t function properly.
- Acquired hypodysfibrinogenemia, which develops due to the other health conditions such as severe liver damage, excessive clotting or clot breakdown, or major blood loss.
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.