The National Hemophilia Foundation is committed to addressing the needs and concerns people living with von Willebrand disease (VWD). We offer several VWD educational publications for individuals, families and healthcare providers. In collaboration with our chapter network, we offer workshops on VWD that can be facilitated upon the request of chapter staff. All workshops and materials are offered in both Spanish and English.

  • VWD: Your Voice Matters
  • Advocating for Your Care in the ER with VWD
  • VWD and Me: Q&A

 

 

NHF also offers VWD education within the VWD track at NHF's Bleeding Disorder Conference.

NHF has joined the the World Federation of Hemophilia's Global VWD Call to Action. This movement provides the possibility to help correct misconceptions and increase knowledge and awareness of VWD among the general population and medical professionals. Each chapter of NHF has been invited to sign this call to action to join the global community 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.

The eight priority areas defined by WFH are:

  1. Improve diagnosis
  2. Greater leadership and advocacy among the medical community, patient community, and related organizations
  3. Consensus on standards of care (SOC) and global guidelines (GG)
  4. Request that organizations incorporate VWD into their work
  5. Address the misconception that VWD is not a serious disease
  6. Destigmatize the discussion surrounding women’s health
  7. Patient empowerment for all
  8. Safe, effective and easy to use treatments available everywhere
     

Learn more about NHF's outreach to undiagnosed people with VWD.

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