Victory for Women with Blood Disorders

Women with bleeding disorders such as von Willebrand disease, hemophilia, or rare platelet disorders can experience severe consequences if their condition is left untreated. For women who do receive proper medical care, their quality of life is much improved. NHF is committed to sharing critical information about bleeding disorders with women who are symptomatic but not yet diagnosed, so that they too can enjoy a higher quality of life once the debilitating symptoms of their chronic condition are better managed.

 

Other priorities of the V4W’s health and bleeding disorder initiative are developing and implementing strategies to educate women and healthcare providers about the symptoms of bleeding disorders, and resources for medical assistance. The initiative also provides support to women already diagnosed, by working with NHF chapters and hemophilia treatment centers (HTCs). The V4W task force provides advice and guidance for program development, and is comprised of women with bleeding disorders, community professionals and experts in the fields of medicine, social marketing and health education. The current population focus for V4W is young women, ages 18-21, and mothers of teenage girls.

 

 

 

Victory for Women with Blood Disorders Initiatives 2011

Awareness and Education

 

Women 18-25 years old who are symptomatic but have not yet been diagnosed

Mothers of teenage daughters who may have symptoms but have not yet been diagnosed

Healthcare providers and others who do not know how to identify a girl or woman with acute symptoms of a bleeding disorder

Development and distribution of print materials

 

Support

 

Women who have questions or concerns about accessing medical and/or support services

National Hemophilia chapters and hemophilia treatment centers serving girls and women in their communities

Community health organizations interested in partnering to improve the health of all girls and women

 

Advocacy

 

Empowering women to seek accurate diagnosis and healthcare

Supporting efforts to improve options for testing and diagnosis of bleeding disorders in girls and women

 

 

V4W Current Projects

 

Marketing campaign and other activities to raise awareness for women not yet diagnosed

 

Chapter grants to support programs for women with bleeding disorders, and encourage collaboration with HTCs and other related community health organizations

Training and support for chapter staff

Building relationships with community health organizations

Scholarships for women with bleeding disorders

Development of new Web site with information and resources

Participation at health professional conferences

Disseminating information about Victory for Women at chapter and HTC events

 

The above information is courtesy of the National Hemophilia Foundation.