Since the World Federation of Hemophilia (WFH) launched the Global VWD Call to Action in 2018, the visibility and awareness of von Willebrand Disease (VWD) have increased globally, and more patients have been identified. Still, there remain gaps in the education, recognition, and diagnosis of VWD worldwide. Identification is key to increasing the visibility of VWD and improving the lives of those living with the condition. Once people with von Willebrand Disease have been identified and diagnosed, the work begins to provide them with access to adequate care and treatment.
The WFH Global VWD Call to Action is an act of solidarity between WFH national member organizations (NMOs) to recognize VWD and break the stigma and isolation that can exist for people living with the condition. It promotes adequate care and treatment for people with von Willebrand Disease (VWD). This is critically important—because with proper care and treatment, people living with VWD can have a much better quality of life.
Around the globe, 47 NMOs have already signed on to the Global VWD Call to Action. Here are some examples of the valuable work that is happening around the world.
The South African Haemophilia Foundation has raised awareness for VWD through social media, a leaflet and a poster targeting women with bleeding disorders and VWD. They have also shared information about the condition in their newsletter and included VWD in their press release for World Hemophilia Day 2020.
The Asociación Nicaragüense de Hemofilia launched a public outreach campaign by participating in a number of media interviews on hemophilia and VWD. They have also trained more than 1,100 physicians, nurses, and medical students on the condition. The association also has one VWD representative on their Board of Directors.
Asociación Nicaragüense de Hemofilia
The Sudanese Hemophilia Care Association has given lectures on VWD to healthcare professionals, medical students, and postgraduates in hematology in order to increase awareness of the condition. During these trainings, the association discussed in detail the importance of identifying symptoms, and referring suspected cases for further assessment. They also recently held a full day workshop in collaboration with the Sudanese Association of obstetrician-gynecologists (OBGYNs) where a number of discussions covered VWD and related outreach efforts.
The Hemophilia Society of Bangladesh has worked with hematologists to improve the process of identifying people with VWD, which can often be difficult to diagnose. Under the WFH Twinning Program, they have worked to translate VWD materials into Bengali. These resources are used to educate the general public.
What is von Willebrand Disease? translated into Bengali
At the national Congress of the Liga Colombiana de Hemofílicos in 2019, the organization included a number of sessions on VWD, covering topics such as lab diagnosis, menstruation, and surgery, and shared what care and treatment of VWD is like in Colombia. Nearly 600 people were in attendance, including hematologists, other healthcare professionals, and patients.
Poster for the 2019 Liga Colombiana de Hemofílicos’ national congress
The Netherlands Haemophilia Society is involved in a research study on von Willebrand Disease in the Netherlands. They are also working with patients and nurses on a paper on the lives and struggles of people with VWD. The society is also participating in the creation of the first Dutch VWD treatment guidelines.
These actions are just a few examples of the incredible work being done globally on VWD. Together, we can create positive changes in the lives of people living with VWD and their families. We hope that more NMOs heed the call to join the Global VWD Call to Action and work towards the WFH vision of Treatment for all.
Ready to join the 47 NMOs who have already signed on to the Global VWD Call to Action? Here’s how your NMO can play a part:
- Read the Global VWD Call to Action
- Review and discuss the initiative with your board of directors
- Reflect on what actions your organization can implement
- Sign on by
- Filling out the VWD call to action form
For more information on VWD and the Global VWD Call to Action, please visit our website or the WFH eLearning centre on VWD. To read about more actions that NMOs are taking around the globe, read our new information sheet or contact the WFH at firstname.lastname@example.org.