COSTS-ECONOMICS

Due to the perception that only 20,000 to 50,000 people in the United States have OI, the National Institute of Health (NIH) has labeled OI as an Orphan Disease. This label means not enough people in the USA have this disorder to justify a significant research budget. This year the NIH will invest only $5,000,000 for OI research. To have the Orphan label removed, at least 200,000 in the USA or 5% of the world’s population must have this disease. We believe this is the case.