Page 13 - HFA Annual Report 2014
P. 13
WE ARE SISTERS
“ They say blood is thicker than water, and I believe that is what
ties this community together. Knowing that others are going through
the same issues helps bind me to the bleeding disorders community.
I was off-balance after my vWD diagnosis. After meeting others in the
community, I found my balance; I was grounded.” – Elizabeth, Type 1 vWD
W omen with bleeding Last year HFA enhanced its local presence by providing
educational sessions via three face-to-face peer support
disorders face the chal-
lenges of unexpected bleeding meetings at our member organizations, reaching more
episodes and limited access to than 100 women. In addition we offered an education track
necessary treatment. Add to at our annual symposium in Tampa, where more than 50
those difficulties the fact that women can go undiagnosed, women with bleeding disorders participated in sessions
and therefore untreated, for years, and it becomes evident on self-care and self-advocacy.
that this segment of our community has specific needs. Focusing on enhanced technologies to improve our service
DID YOU KNOW that it is to women was at the top of our priorities this year. We en-
estimated that one percent of gaged a community focus group and medical advisors in the
design and testing of a new mobile app that tracks monthly
women in the US may have a menstrual cycles, as well as logs symptoms and notes for
bleeding disorder? healthcare providers. We also invested heavily in a complete
redesign of our program webpages receiving more than
Blood Sisterhood serves women at all stages of life. This 2,000 views. The updated site provides women with access
program utilizes a multi-faceted approach to address issues to educational materials, resources and tools to assist them
such as reducing stress, increasing physical fitness, and in their journey to understanding their condition and be-
building a strong and well-informed constituency. coming strong advocates for themselves and their families.
“ They say blood is thicker than water, and I believe that is what
ties this community together. Knowing that others are going through
the same issues helps bind me to the bleeding disorders community.
I was off-balance after my vWD diagnosis. After meeting others in the
community, I found my balance; I was grounded.” – Elizabeth, Type 1 vWD
W omen with bleeding Last year HFA enhanced its local presence by providing
educational sessions via three face-to-face peer support
disorders face the chal-
lenges of unexpected bleeding meetings at our member organizations, reaching more
episodes and limited access to than 100 women. In addition we offered an education track
necessary treatment. Add to at our annual symposium in Tampa, where more than 50
those difficulties the fact that women can go undiagnosed, women with bleeding disorders participated in sessions
and therefore untreated, for years, and it becomes evident on self-care and self-advocacy.
that this segment of our community has specific needs. Focusing on enhanced technologies to improve our service
DID YOU KNOW that it is to women was at the top of our priorities this year. We en-
estimated that one percent of gaged a community focus group and medical advisors in the
design and testing of a new mobile app that tracks monthly
women in the US may have a menstrual cycles, as well as logs symptoms and notes for
bleeding disorder? healthcare providers. We also invested heavily in a complete
redesign of our program webpages receiving more than
Blood Sisterhood serves women at all stages of life. This 2,000 views. The updated site provides women with access
program utilizes a multi-faceted approach to address issues to educational materials, resources and tools to assist them
such as reducing stress, increasing physical fitness, and in their journey to understanding their condition and be-
building a strong and well-informed constituency. coming strong advocates for themselves and their families.
