World Hemophilia Day: Guarding the 'Glass People'

Today marks the 38th World Hemophilia Day. Under the theme "Diagnosis: First step to care" launched by the World Federation of Hemophilia (WFH), this year's campaign calls on global society to prioritize timely diagnosis of hemophilia, identify more undiagnosed patients, enable early detection and treatment, and reduce misdiagnosis and missed cases.

Hemophilia is a group of inherited bleeding disorders characterized by impaired blood coagulation. Patients lack certain clotting factors, leading to prolonged bleeding even from minor injuries. They face persistent bleeding risks from trivial bumps or bruises. Spontaneous bleeding can occur even at rest, affecting joints, muscles, the urinary tract, and in severe cases, the brain, which can be life-threatening.

For children with hemophilia, initial bleeding usually begins between ages one and two, commonly presenting as bruising on the buttocks and knees after sitting, crawling or standing. As they grow older, bleeding in joints, muscles, and deep tissues becomes more frequent, sometimes accompanied by gastrointestinal or central nervous system bleeding. Repeated joint bleeding also causes cumulative damage, joint deformity, and hematomas.

On March 1, 2026, China's first comprehensive scientific report on hemophilia-related joint health, the White Paper on Joint Health of Chinese Hemophilia Patients, was officially released. According to the National Hemophilia Registry, over 80% of patients in China still receive on-demand treatment only, and approximately 30% experience delayed diagnosis.

To address the high risk of disability, experts emphasize a new proactive management system for hemophilia centered on preventive care, lifelong monitoring, and precise intervention.

Conceptual innovation forms the foundation of this new system. The Chinese guidelines on the treatment of hemophilia (2025) have established regular replacement therapy as the standard of care. This approach involves regular infusions of clotting factors or non-factor therapies to prevent bleeding episodes and preserve normal joint and muscle function. The treatment goal has shifted from passive hemostasis to achieving zero bleeding and protecting joints, stopping joint damage at its source.

China will continue to improve access to non-factor therapies and promote a nationwide transition from simple emergency hemostasis to lifelong proactive management. Let us join hands to raise awareness, strengthen diagnosis, and advance standardized treatment, so that every hemophilia patient can stay away from disability, embrace a better life, and fully reintegrate into society – for every rare disease deserves to be seen, and every patient deserves to be protected.