Global VWD Call to Action - Form

At the World Federation of Hemophilia, we believe all bleeding disorders matter. Both women and men are equally affected by von Willebrand Disease.

From January 27 – January 29, 2017, the WFH, EHC and twelve individuals from bleeding disorder and rare disorder patient organizations from around the world gathered in Amsterdam to share their experiences on addressing the needs of people with VWD. The agenda included current perspectives from individual patients and patient organizations as well as action planning for a brighter future for people with VWD. Current perspectives and past experiences relayed from patient representatives and organizations revealed common, consistent themes which act as barriers to accurate diagnosis and management of VWD. These themes include: misconceptions and lack of knowledge and/or awareness of VWD even amongst medical professionals; lack of consistency in providing care and often lack of access to treatment; and feelings of invisibility as a patient with VWD.

As a result of the meeting, attendees recommended a greater focus be placed on VWD. Eight priority areas were identified:

  • Improve diagnosis
  • Address the misconception that VWD is not a serious disease
  • Facilitate the availability of safe, effective and easy-to-use treatments everywhere
  • Encourage greater leadership and advocacy in the medical community, the patient community
  • Establish a consensus on Standards of Care (SOC) and global guidelines (GG)
  • Request that organizations incorporate VWD into their work
  • Destigmatize the discussion of women’s health
  • Empower patients everywhere

The group calls on the entire global bleeding disorders community, including patient organizations and health care professionals, to integrate and provide recognition of VWD and other rare bleeding disorders into their work.

Each national member organization of the WFH is invited to sign this Call to Action to acknowledge the work that needs to be done, to make a commitment to recognizing VWD and other rare bleeding disorders by taking action to create awareness, resources and provide support to improve the lives of those living with VWD.

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This organization commits to (insert one step organization will take around VWD awareness, inclusion, diagnosis or management) in the next year and will share any progress and/or outcomes with this group at that time.
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