Every important movement starts with the realization that something needs to change, and that that change can happen through collective action. People with von Willebrand disease (VWD) have often said that they feel isolated and that their disease—and its severity—isn’t properly recognized. The World Federation of Hemophilia (WFH) is providing a global voice to improve care and treatment for people with VWD through the VWD Initiative Program and the Global VWD Call to Action.
The Global VWD Call to Action was launched in 2017 with the objective of increasing the awareness of VWD. Each national member organization (NMO) of the WFH is invited to sign the Call to Action to acknowledge the work that needs to be done to recognize VWD and other rare bleeding disorders, take action to create awareness, make resources available, and provide support to improve the lives of those living with the condition. Thirty-nine NMOs have signed-on since the endeavour was launched and have committed to raising awareness of VWD.
In this article, we will take a look around the world to find out about the actions organizations are taking in the name of the Global VWD Call to Action.
In Algeria, an interview was given on TV on World Hemophilia Day about women with VWD, and women and bleeding disorders.
In Panama, the Fundación Panameña de Hemofilia launched a campaign, called, “I am VWD”. The first action of this campaign was to publish a week of posts on social media explaining what VWD is and how it affects patients. The Panamanian NMO also modified their vision and mission statements to include VWD.
In Ecuador, a partnership between a university, the ministry of health, and the local NMO—the Fundación Hemofílica Ecuatoriana (FUNDHEC)—was established to help better diagnose VWD.
In Australia, the Haemophilia Foundation Australia (HFA) published two educational resources for girls and women, with dedicated sections on VWD, and on the personal stories of patients with VWD.
The Hemophilia Society of Bangladesh (HSB) worked to provide awareness-raising efforts in the community and hold events for both hemophilia and VWD.
The Swedish Hemophilia Society (SHS) held an educational webinar on VWD with a doctor and a patient which was seen by over 100 people. The SHS also distributed educational VWD material to the participants of the Swedish school nurse exhibition.
These are just a few examples of the work that is being done by NMOs to both increase visibility of VWD and dispel the myths related to the condition. Each NMO is working within the realities of their own country to make a difference and improve the lives of men and women with VWD.