The Global VWD Call to Action was officially launched at the 2018 Global NMO Training. It has been unanimously approved by the WFH Board and endorsed by the WFH von Willebrand Disease and Rare Bleeding Disorders (VWD–RBD) Committee.
The Global VWD Call to Action is a call to WFH national member organizations (NMOs) to recognize VWD and break the stigma and isolation that can exist for people living with VWD. It promotes adequate care and treatment for people with VWD.
So far, 48 NMOs have signed on to the call. For more information on the Global Call to Action, please read this information sheet.
NMOs can implement several measures in order to better integrate VWD into their work and to raise awareness for the condition. For instance, they can organize a session with patients and families on what VWD is; write articles in a newsletter, blog or on social media; or liaise with a Hemophilia Treatment Centre to educate and support patients, parents and families. NMOs can also add VWD to their advocacy efforts by creating a VWD-focused committee. To learn about actions already being taken by NMOs around the globe, please read this information sheet.
- 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
Since signing the Global VWD Call to Action, many organizations have:
- Changed the mission of the organization to include VWD
- Organized a talk with patients and families on what VWD is
- Written an article in their newsletter, blog, website, or social media pages on VWD
- Provided orientation and accompaniment to parents on what VWD is
- Adopted VWD as part of their organization’s mandate
- Included VWD in their organization’s advocacy efforts
- Review and discuss it with your Board of Directors
- Reflect on what actions your organization can implement
- Sign on by going to the VWD call to action form or printing the PDF and faxing it to the WFH at +1-514-875-8916