VWD Initiative Program

With up to 1% of the World's population suffering from von Willebrand disease (VWD), it is by far the most common type of bleeding disorder. However, since most people experience very mild symptoms, only a small number of them are aware they have the condition. In fact, it is estimated that as many as 0 out of 0 people with VWD have not been diagnosed. Identifying VWD patients is a key challenge, and laboratory testing is difficult because no single test can provide a definitive diagnosis.

With proper treatment, people with VWD can have much better health outcomes. However, there is a large gap in the education, recognition, and diagnosis of VWD worldwide. The WFH VWD Initiative Program seeks to improve diagnosis and clinical management of VWD, and create greater awareness of VWD in patient and medical communities.

Objectives

Increase the number of identified and diagnosed people with VWD
Share knowledge and build global awareness about VWD through training, outreach, advocacy, and education
Improve care and treatment for VWD through training of healthcare professionals
Establish a global community of patients with VWD to facilitate support, communication, knowledge and experience exchange, and empowerment
Establish greater leadership and advocacy among medical and patient communities

Components

The program includes four components:

Face-to-face forums

Face-to-face forums can take the form of symposiums, workshops and trainings for lay and health-care professionals. These are opportunities for acquiring practical skills and knowledge on the clinical management of VWD as well on how to conduct outreach and raise awareness of VWD. They offer spaces to share experiences and build connections among patients with VWD, enable a better sense of community between patients with VWD and treaters, and enhance the empowerment of patients with VWD. The WFH recently conducted a regional training on VWD and hemophila in South Asia and East Asia with the participation of seven countries. The topics discussed during the training included VWD diagnosis, treatment options and pregnancy for women with VWD.

Outreach activities

WFH has supported outreach projects for several years with the objective of identifying new patients and creating visibility for VWD. Through the VWD Initiative Program, the Philippines, Sri Lanka, Serbia and Honduras have all received support to conduct campaigns.

Education

WFH offers a series of educational resources on VWD through the WFH eLearning Centre.

Advocacy

Empower patients and patient organizations to better advocate for the improvement of care for VWD, diagnosis and treatment in their country.

VWD Global Group

The VWD Global Group is a working group the WFH created in 2017 made up of patient organizations. The group is committed to addressing the unmet needs and improving the quality of life of the global VWD community. Current member organizations are from France, Panama, Pakistan, Tunisia, Sweden, Sudan, Canada, U.K., South Africa, Latvia, Australia, U.S.A, India and Malaysia.

Global VWD Call to Action

The Global VWD Call to Action was officially launched at Global NMO Training 2018. It has been unanimously approved by the WFH Board and endorsed by the WFH von Willebrand Disease and Rare Bleeding Disorders (VWD–RBD) Committee.

Each WFH national member organization (NMO) is invited to sign onto the Call to Action to make a commitment to recognizing VWD and other rare bleeding disorders by taking action to create awareness, to acknowledge the work that needs to be done, and to offer resources and provide support to improve the lives of those living with VWD. So far, 39 NMOs have signed on to the initiative.

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.

A media event was held at the WFH Resource Center during the WFH 2018 World Congress to highlight the importance of the Global VWD Call to Action.

Key priorities outlined in the Call to Action are to:

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

Making a Difference

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

Step by step process for signing on to the Global VWD Call to Action

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

For more information about the Global VWD Call to Action, please contact the WFH at vwd@wfh.org.

For more information about the WFH VWD Initiative Program, contact the WFH at vwd@wfh.org.

Latest VWD News

VWD Promotion Week During the World Hemophilia Day Campaign
The WFH dedicated one week to the promotion of VWD during the 2019 World Hemophilia Day Campaign. The promotion was done on social media platforms including Facebook and Twitter. A step by step approach was followed, with initial posts offering an explanation of what VWD is and final posts promoting the Global VWD Call to Action. The overall theme of the week was “Your normal is not my normal”.

Join us in the Global VWD Call to Action

Global VWD Call to Action

Join Us in the Global VWD Call to Action

Each WFH national member organization (NMO) is invited to sign onto the 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, and to offer resources and provide support to improve the lives of those living with VWD. So far, 39 NMOs have signed on to the initiative.

Step by step process of signing on to the Call to Action

Review and discuss it with your board of directors
Reflect on what actions your organization can implement
To sign the call, there are two options:
- Go to the VWD call to action form and sign on
- Print the PDF and fax it to the WFH at +1-514-875-8615

For more information about the Global VWD Call to Action and the WFH VWD Initiative Program please contact the WFH at vwd@wfh.org.