Abstract Number: PB0926
Meeting: ISTH 2021 Congress
Background: Paradoxically, the most common rare bleeding disorder, von Willebrand disease (VWD), is also the most underdiagnosed. An estimated 1% of the population carries mutations of the von Willebrand factor gene that affect coagulation, but only 1% of this estimated population have been diagnosed with VWD. Even allowing for a large fraction of asymptomatic mutation carriers, this discrepancy suggests a substantial lack of awareness of VWD among healthcare professionals and the general population, as well as reflecting the complexity of VWD diagnosis.
Aims: To develop a global initiative designed to increase awareness and education around VWD and support diagnosis of the condition.
Methods: As part of the initiative, we launched www.vwdtest.com. This multilingual online resource includes a simple self-assessment tool to identify people with potentially abnormal bleeding symptoms and provides diagnostic guidance and expert advice if a bleeding disorder is suspected. We report on engagement with this platform to date, in particular following the launch of a Spanish version of the website in Latin America in September 2020.
Results: Between late September 2020 and the end of January 2021, over 26000 unique users from 47 countries accessed the website. Over 80% of visitors were from Latin America, predominantly Argentina, reflecting a successful launch of the website and highlighting a potential demand for such a resource in this region. During this period, over 600 visitors completed the online bleeding assessment test.
Conclusions: Our interim experience suggests a high demand for increased education on bleeding disorders, in particular VWD. The high engagement rate from Latin America reflects the need for a global initiative. We aim to further expand this worldwide support platform and initiative, focusing especially on those regions with limited access to diagnostic and educational tools.
To cite this abstract in AMA style:Corrales-Medina FF, Berntorp E. Don’t Let Bleeding Go Unnoticed – A Global Initiative to Increase Awareness of von Willebrand Disease [abstract]. Res Pract Thromb Haemost. 2021; 5 (Suppl 2). https://abstracts.isth.org/abstract/dont-let-bleeding-go-unnoticed-a-global-initiative-to-increase-awareness-of-von-willebrand-disease/. Accessed September 24, 2023.
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