WFH NETWORK

VWD Global outreach: join in the Call to action!

Since the World Federation of Hemophilia (WFH) unanimously adopted the Global VWD call to action in 2018, the visibility and recognition of von Willebrand disease (VWD) has increased worldwide. More national member organizations (NMOs) have integrated VWD into their work, with 40 NMOs signing on to the initiative and committing to take concrete actions to raise awareness and advocate for those living with VWD.

What is the Global VWD call to action? It’s an act of solidarity for bleeding disorder patient organizations, where we ask for VWD to be recognized globally in order to break the stigma and isolation that exists among those who have the condition. The initiative also promotes proper care and treatment for people living with VWD. Von Willebrand disease is the most common bleeding disorder, but it is rarely diagnosed, with the result that many people with the condition are left untreated.

The WFH works to ensure that every person⁠—those living with hemophilia and von Willebrand disease (VWD), those with rare factor deficiencies, and women with bleeding disorders⁠—have access to world-class care and recognition of their condition.

Since signing the Global VWD Call to Action, many organizations have:

  • Broadened the mission of their organization to include VWD
  • Organized talks with patients and families to explain what VWD is
  • Included VWD in their organization’s advocacy efforts
  • Led outreach campaigns in different areas of their country
  • Written an article in their newsletter, blog, website, or social media pages on VWD
  • Provided orientation and accompaniment to parents to explain what VWD is

How can national member organizations (NMOs) sign on?

  1. Read the full Global VWD call to action here
  2. Review and discuss the initiative with your board of directors
  3. Reflect on what actions your organization can implement
  4. Then sign on by

Or by

Together, we are paving the way to better care and treatment for those living with VWD. All bleeding disorders matter, so let’s work together to break the isolation many patients feel and ensure that all patients receive proper care and treatment.

For more information about the Global VWD Call to Action please visit our website here or contact the WFH at vwd@wfh.org.