Rare bleeding disorders


What is a rare bleeding disorder

There are a number of extremely rare bleeding disorders, including deficiencies of clotting Factors I, II, V, VII, X, XI, and XIII. Various recombinant and plasma-derived products are used to treat these disorders.

Factor XIII deficiency is the rarest Factor deficiency, occurring in 1 per 5 million births. It is inherited in an autosomal recessive fashion, meaning that both parents must carry the gene to pass it on to their children; it affects men and women equally.

Afibrinogenemia (a Factor I deficiency) is a rare congenital disorder characterized by absence of protein in the blood that is essential in the blood clotting (coagulation) process. This protein is known as fibrinogen or coagulation Factor I. Affected individuals may be susceptible to severe bleeding (hemorrhaging) episodes, particularly during infancy and childhood. Congenital afibrinogenemia is thought to be transmitted as an autosomal recessive trait.

Hypofibrinogenemia (a Factor I deficiency) is one of two quantitative defects, meaning the amount of fibrinogen in the blood is abnormal. Hypofibrinogenemia is when there is a low level of fibrinogen. Many people who have hypofibrinogenemia do not need treatment.

For more information, visit our website dedicated to bleeding disorders at www.hemophilia.com.

Questions regarding your rare bleeding disorder therapy

You can reach the Accredo bleeding disorder care team, anytime, day or night, seven days a week.

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Most forms of hemophilia are passed through families (inherited) or result from problems with the genes (genetic material) that instruct the body to make the proteins that help blood to form clots. These proteins are known as “clotting Factor.” There are 13 different types of clotting Factor. Different problems and symptoms can occur, depending upon which clotting Factor is absent.

For more information, visit our website dedicated to bleeding disorders at www.hemophilia.com.


The following specialty medications are available at Accredo, a specialty pharmacy for rare bleeding disorders.

Financing Your Care

Financial assistance coordination may be available to help with your medication costs, including manufacturer and community programs. Accredo representatives are available to help find a program that may work for you. Contact your Customer Experience Specialist at 866-712-5200.

Financial Guidance

Life-saving specialty medication can be expensive. Learn how the Accredo teams help individuals find ways to afford the medication they need to survive in this video.

Meet the Team

Accredo’s Acute Hepatic Porphyria team is dedicated to serving you and we understand the complexity of your condition. Our specialty-trained clinicians are available 24 hours a day, seven days a week, to answer any questions.

Why We Do It

Accredo supports patients with chronic and complex conditions and helps them live their best life. Watch our video to learn why we do what we do for our patients.

Why We Do It video transcript

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