von Willebrand disease (VWD) is a bleeding disorder linked to a blood-clotting protein called von Willebrand factor that helps control bleeding. People with VWD do not have enough von Willebrand factor, or it does not work the way it should. As the most common bleeding disorder, VWD should be a well-known condition. In fact, the opposite is true. Hemophilia is much better known, and many people are not even aware that VWD exists.
Because of this lack of awareness, there are many misconceptions about the seriousness of the disease, often leaving people with VWD feeling alone and isolated. Fortunately, VWD awareness and education are improving. While the gap in knowledge is still great, the World Federation of Hemophilia (WFH) is helping to empower and educate both the community and healthcare professionals so they know how to recognize VWD and how to help manage it.
The VWD Initiative Program of the WFH addresses the unmet needs of people with VWD by focusing on outreach, building knowledge of the clinical management of the disease, and providing training and guidance on the integration of VWD into the work of national member organizations (NMOs). The Global VWD Call to Action is one example of how this awareness is building.
The impetus for the VWD Initiative Program came from a meeting in early 2017 in which patients and representatives of patient organizations discussed the crucial need to address the impact of VWD in the community. The attendees identified eight priority areas to help WFH NMOs place greater focus on the disease. The WFH Board of Directors unanimously agreed on the Global VWD Call to Action and its international promotion, and it was publicized at the 2018 WFH World Congress in Glasgow, Scotland. So far, 39 NMOs have signed on.
For French Haemophilia Association President Nicolas Giraud, lack of awareness and education around VWD, together with a difficult diagnosis process, has isolated people with the disease. “We have to remember that both women and men are equally affected by VWD,” Giraud explains. “The purpose of this Call to Action is to help NMOs be more inclusive so that we become stronger as a bleeding disorder community.”
The benefits of the Global VWD Call to Action will be promoted again during the WFH 2020 World Congress in Kuala Lumpur, Malaysia. There will be a pre-Congress session on Global Initiatives for Bettering Care of VWD that will cover ways to simplify diagnosis, making it more accessible and feasible. The session will include special considerations for women with VWD. Other sessions during the Congress will cover treatment guidelines and the genomic approach to diagnosis of VWD. Another session will look more closely at how VWD is perceived and the psychosocial issues that patients face. This session will provide patients the opportunity to share their experiences with other session participants.
The WFH 2020 World Congress will be a key event for the global bleeding disorders community, and one that is patient-inclusive and multidisciplinary. We hope to see you there.
» Find out more or register for the Congress
» Learn more about the Global VWD Call to Action