|
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
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
|
|
