A 2019 study led by McMaster University revealed that hemophilia is about three times more prevalent than previously estimated, affecting more than 1.1 million men worldwide. Many cases remain undiagnosed, especially in regions with limited healthcare access.
By analyzing data from countries with strong patient registries, researchers calculated that more than one million men worldwide are living with hemophilia, including over four hundred thousand with severe disease. The findings also show that many individuals remain undiagnosed, particularly in countries with limited access to treatment.
The study examined both overall prevalence and the number of newborns expected to have hemophilia, allowing researchers to estimate the impact on life expectancy. The results indicate that people with hemophilia face a substantial reduction in lifespan, especially in lower income regions where treatment is scarce.
Researchers note that understanding the true number of affected individuals is essential for improving care, planning health system resources, and guiding future investment in treatment development. The work also underscores the importance of long term data collection in rare disease research.
