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Teenage girl reviewing information about von Willebrand disease and women's bleeding disorders

Unequal care. Lifelong impact. 
Bleeding and clotting disorders in girls and women 

Bleeding and clotting disorders can affect girls and women at every stage of life, from their first period through pregnancy, postpartum recovery and menopause.

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Too often, women do not get the care they need. Symptoms like heavy menstrual bleeding, pelvic pain or unexpected blood clots are frequently dismissed or misunderstood. Many women wait years for an accurate diagnosis of conditions like von Willebrand disease, venous thromboembolism or other hemostatic disorders.

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This delay matters. It can lead to ongoing health problems, iron deficiency anemia and preventable complications including postpartum hemorrhage and recurrent pregnancy loss.

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This is the disparity. Girls and women are not always recognized, diagnosed or treated in ways that reflect their unique biology, hormonal changes and life-stage health needs.

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Closing this gap means earlier diagnosis of bleeding and clotting conditions, better access to evidence-based care and treatment that considers the whole person.

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Women enjoying the outdoors representing active living and blood clot awareness for women across the lifespan

Every two minutes, a woman dies from complications related to pregnancy or childbirth. Many of these deaths are caused by bleeding and are preventable. 

Global impact and health equity

The Reality for Women Worldwide

Bleeding and clotting conditions continue to contribute to preventable maternal illness and death around the world. Access to diagnosis, treatment and specialized care remains deeply unequal across regions and populations.

Global Burden

Maternal hemorrhage and thrombosis remain major contributors to maternal morbidity and mortality worldwide. Click below to learn more. 
 

A mother and her two daughters
The disparity in developing countries is exponentionally worse

The disparity in developing countries is exponentially worse.

Here's what the situation shows:
 

Diagnosis gap:

In low-income and low-to-middle-income countries, 75% of people with inherited bleeding disorders have not been diagnosed. To put that in perspective: In Europe and the Americas, 81% and 54% of cases are diagnosed, respectively, but only 8% are diagnosed in Africa and 15% in Southeast Asia.
 

Infrastructure barrier:
The establishment of coagulation laboratories in certain low- and middle-income countries faces substantial challenges due to the high capital investments needed for instruments, along with ongoing costs for reagents. Consequently, while some countries have developed the necessary laboratory infrastructure to conduct these essential tests, many others lack the resources and facilities to do so effectively.

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Treatment access:
While 11 billion clotting factor units are available globally, due to a lack of financial resources, these treatments are often unavailable to people with hemophilia in low-income countries. In developed countries, life expectancy for people with hemophilia is close to that of healthy persons. This is not the case in developing countries.
 

Timing of diagnosis:
The median age at diagnosis of people with inherited bleeding disorders in low-income countries is three to four decades later than in upper-middle and high-income countries. Many women die from undiagnosed bleeding disorders during childbirth before they are ever confirmed.

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Why does this matter? 


 In some low- and middle-income countries, women with undiagnosed von Willebrand disease or thrombophilia often face significant barriers to healthcare, including limited access to essential baseline testing, a lack of education about their risks, and inadequate preventive care prior to pregnancy. As a result, many of these women are at heightened risk for complications during childbirth, leading to preventable maternal mortality

Explore inequities in women’s healthcare worldwide

01

Delayed diagnosis and missed recognition

Women’s symptoms, particularly heavy menstrual bleeding, pain or thrombosis warning signs, may be normalized or dismissed, delaying diagnosis and treatment.

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02

Maternal health and preventable harm

Thrombosis remains a leading cause of preventable maternal death, while postpartum hemorrhage remains a major cause of mortality globally.


Many women lack access to risk assessment, protocols and timely treatment.

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03

Inequities in access to diagnosis and treatment

Access to trained specialists, diagnostics, hemostatic agents, anticoagulants and advanced therapies varies widely by geography, health system and income.

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04

Research gaps and underrepresentation

Women have historically been underrepresented in research, and sex-specific evidence gaps remain across bleeding and clotting disorders. These gaps can affect treatment decisions and outcomes.

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05

Bias, stigma and being dismissed

Symptoms may be minimized or attributed to “normal” life events. This can affect patient safety, trust and the ability to receive appropriate care.

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Structural and geographic barriers to care

Some women in low-resource settings, rural communities and historically underserved populations often face the greatest barriers to diagnosis and care.

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Provider training and awareness gaps

Many systems still lack sufficient training and standardized protocols to identify and manage women-specific bleeding and clotting concerns.

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Policy gaps and what needs to change

Disparities are also policy issues. Better national strategies, standards of care and inclusion in women’s health planning can improve outcomes.

ISTH Women's Health: Your blood clot and bleeding disorders matter.

Hover over the numbers to learn more 

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