Northern Ohio Hemophilia Foundation

Description

Hemophilia is a genetic illness that affects one out of every 7,500 boys and men from birth. A similar disorder, von Willebrand Disease, affects 1-2% of males and females equally. These disorders result in spontaneous and prolonged bleeding due to the lack of clotting factors in the blood. These are lifelong conditions that can be treated with clotting factor administered into the vein. Because bleeding is frequent and treatment is expensive, affected families struggle to lead normal lives. There is no cure. It is more than most families can bear on their own. Because of NOHF, they don't have to. NOHF is a private, non-profit organization that was established in 1954 as a support system by and for concerned parents. The professional organization now serves 24 counties in Northeast Ohio. NOHF provides education, advocacy, and support services such as counseling, scholarship programs, educational workshops, family activities, emergency financial assistance and camping scholarships. Hemophilia is not only rare; it is also one of the most costly medical disorders in the world. The average cost for a family with one child who has a severe genetic bleeding disorder is $60,000 to $260,000 a year for medical care. If the family has insurance, their co-payment averages $40,000 to $70,000 a year. This cost puts tremendous financial burdens on families in the bleeding disorder community. Most children have reached their lifetime insurance cap by the age of twelve.