Paving a path for greater awareness of VWD globally

In 2004, the World Federation of Hemophilia (WFH) adopted a new strategic vision of Treatment for All, and, in doing so, expanded services for other inherited bleeding disorders, including von Willebrand disease (VWD), rare factor deficiencies, inherited platelet disorders, and women with bleeding disorders. Expanding services for VWD—and in particular, increasing diagnosis of VWD globally and awareness—has been an important focus area for the WFH because von Willebrand disease is the most common type of bleeding disorder.

As part of its goal to expand support for patients with von Willebrand disease, the WFH has supported outreach projects in different countries and conducted VWD-focused educational events for lay and health care professionals. Educational resources have also been produced to educate the community and general public about bleeding disorders.

The WFH held its first international VWD symposium in Prague, Czech Republic, from December 1 to 2, 2017. The event brought together a total of 29 participants from all regions of the world—including patients, caregivers and healthcare professionals—to discuss issues related to VWD. Representatives from countries such as Lebanon, Mexico and Sudan shared strategies on how to conduct outreach as well as to identify patients. Participants from other countries, such as Australia, the United States and France, shared their expertise in building awareness and in developing educational programs. Views on the challenges of treating patients from the healthcare perspective were shared by representatives from Thailand, while participants from Honduras shared how their national member organizations (NMOs) have incorporated VWD into their work. South African representatives expressed opinions on what it’s like to be a caregiver, and the importance of advocacy. Turkey, Colombia, Germany, Hungary and the Czech Republic also sent NMO representatives and health care professionals to share their experiences and learnings. Of course, patients share their realities and challenges in obtaining proper diagnosis and treatment.

As one participant remarked, “When people think of bleeding disorders, they automatically think hemophilia. VWD is not hemophilia—it’s a totally separate disease that can have a great impact on quality of life, too.” There’s a commonly-held belief that only women can have VWD, but the disease effects men and women equally. While von Willebrand disease is the most common bleeding disorder, few people are diagnosed and thus, few patients are identified. Participants at the Prague symposium came from different countries, and yet they had very similar experiences as patients, healthcare professionals, and caregivers.

Proper diagnosis was discussed at great length during the two-day symposium, as it poses a great challenge for many countries. Participants were asked to reflect on how diagnosis can be simplified and made more accessible. Other issues the group discussed were how to best provide adequate care for VWD patients, the importance of including an obstetrician (OB-GYN) in the comprehensive care team, and the importance of having health care professionals with sufficient knowledge of VWD involved in the process. There was an overall agreement that more awareness and education is needed for both lay and health care professionals (HCPs) to ensure a better quality of life of patients.

Building a sense of community and solidarity is key in moving forward for everyone impacted by von Willebrand disease. Last year, the WFH launched a new program to help support VWD stakeholders. Called the VWD Initiative Program, the endeavour aims to raise awareness of VWD globally, to educate health care professionals, patients and families on the condition, and also to help increase diagnosis of the condition.

During the symposium, one healthcare professional commented, “People with VWD often suffer in silence, as there is little recognition of the disease and its impact.” Together, everyone can work to change this.