What is von Willebrand disease?

According to the Centers for Disease Control and Prevention (CDC), von Willebrand disease (VWD) is the most common bleeding disorder, affecting up to 1% of the US population, or more than 3.2 million Americans.1

Most cases of VWD are mild. Many people have no bleeding symptoms and do not know they have a defect in their von Willebrand factor (VWF) gene2,3

VWD is equally likely to affect men and women2; because of reproductive factors, women are more likely to be diagnosed4

According to a CDC survey (N=75), it takes an average of 16 years from the onset of symptoms for women to receive an accurate diagnosis of VWD

Kim was 35 when she was diagnosed with VWD. Her daughter Bekah was 14.


I’ve taught the kids how to make VWD part of their life but not their life.” —Kim, HUMATE-P user

Diagnostic considerations for VWD

Proper testing and early diagnosis of VWD can optimize treatment and help patients live a more normal, active life. Everyone who has a bleeding disorder should have an individualized assessment based on their specific history, signs, and symptoms. Identifying VWD type and subtype requires multiple laboratory tests as well.5

The patient’s personal bleeding history can be translated into a bleeding score

Laboratory tests along with bleeding score help diagnose von Willebrand disease

In many cases, people who have milder forms of VWD do not have a family history of an established bleeding disorder5

VWD diagnosis begins with an accurate assessment

VWD Diagnostic Algorithm VWD Diagnostic Algorithm

VWF levels refer to VWF antigen (VWF:Ag) and/or plate-dependent VWF activity.

VWF level 30 to 50 refers to VWF levels of 0.30 to 0.50 IU/mL; the lower limit of the normal range as determined by the local laboratory should be used if it is <0.50 IU /mL.


BS = bleeding score

CB/Ag = ratio of collagen binding to antigen

CBC = complete blood cell count

DDAVP = desmopressin

FVIII = factor VIII

FVIII:C = factor VIII coagulant activity

PT = prothrombin time

PTT = partial thromboplastin time

TT = thrombin time

VWF:Ag = VWF antigen

VWF:FVIIIB = VWF factor 8 binding

VWF:CB/Ag = ratio of VWF collagen binding to antigen

Adapted from James PD et al. ASH 15th NHF WFH 2021 guidelines on the diagnosis of von Willebrand disease. Blood Adv 2021.

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effective bleed control

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  1. What is von Willebrand Disease? CDC website. https://www.cdc.gov/ncbddd/vwd/facts.html. Updated April 1, 2021. Accessed September 21, 2022.
  2. National Hemophilia Foundation. Nurse’s Guide. https://www.hemophilia.org/healthcare-professionals/allied-healthcare/nursing/nurses-guide-to-bleeding-disorders. Accessed September 27, 2021.
  3. National Hemophilia Foundation. Von Willebrand disease. https://www.hemophilia.org/Bleeding-Disorders/Types-of-Bleeding-Disorders/Von-Willebrand-Disease. Accessed September 27, 2021.
  4. Data and Statistics on von Willebrand Disease. CDC website. https://www.cdc.gov/ncbddd/vwd/data.html. Updated October 28, 2019. Accessed on April 8, 2020.
  5. National Hemophilia Foundation. Nurse’s Guide. https://www.hemophilia.org/healthcare-professionals/allied-healthcare/nursing/nurses-guide-to-bleeding-disorders. Accessed October 27, 2022.

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