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Hear from people living with a rare blood disorder

Hemophilia A and B

The most common form of hemophilia is hemophilia A, which is caused by a deficiency in factor VIII. Hemophilia B is caused by a deficiency in factor IX. Both factor VIII and factor IX are proteins that play an important role in forming blood clots that prevent internal bleeding or help stop bleeding after external injuries such as cuts.

Every patient's experience is unique and individual results may vary. These patients were compensated for their time creating these videos.

Meet Charles, Marques,
and Laithan

Charles and his sons talk about the impact of hemophilia on their family.

Meet Darlene and family

Darlene with her daughter-in-law Kristin and her grandchildren provide their perspectives on connections and being agents of change in the hemophilia community.

Cold agglutinin disease

Cold agglutinin disease (CAD) is a rare, serious blood disorder. It's a form of autoimmune hemolytic anemia (AIHA), which means the immune system mistakenly attacks and destroys red blood cells. Symptoms may include fatigue, weakness, light-headedness, shortness of breath, palpitations, jaundice, and a cold-induced circulatory symptoms, bluish or reddish discoloration of the skin, blood in your urine, or dark urine.


Meet Sharon

Sharon discusses the role family plays in helping her manage her condition.

Acquired thrombotic thrombocytopenic purpura

Acquired thrombotic thrombocytopenic purpura (aTTP) is a rare, life-threatening, autoimmune blood clotting disorder that affects about 2,000 people in the US every year.

The disease is caused by a deficiency of an enzyme called ADAMTS13. The lack of functioning ADAMTS13 enzyme results in blood platelets sticking together and forming small clots (microthrombi) throughout the body, which can lead to neurological, cardiac, renal and gastrointestinal damage, and, in some cases, death.


Meet Anise

Anise opens up about navigating aTTP and shares how she was able to take her power back from this rare blood disorder.

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