The Centers for Disease Control and Prevention (CDC) has awarded the National Hemophilia Foundation (NHF) a five year cooperative agreement funding four areas of NHF’s programming: HANDI, and education for newly diagnosed families, youth and women with bleeding disorders.
HANDI is an information resource center and clearinghouse established in 1991 to serve the broad community of individuals affected by and/or involved in the treatment of bleeding disorders. It is a specialized health-based library and helpline service that houses the world’s largest centralized library of information about bleeding and clotting disorders and secondary conditions. These materials educate consumers and encourage them to take action to seek comprehensive care in treatment, prevention and a myriad other issues affecting their lives. Through this grant, NHF will measure HANDI’s impact through quantitative and qualitative evaluation. The CDC and NHF will work together to develop evaluation and tracking of client information and ascertain behavioral change, which will be a significant focus of the work the cooperative agreement will enable us to pursue.
Two of the modules (education for newly diagnosed families and youth) funded by the CDC will allow NHF to create a new online, life stages approach to education to assist those affected by bleeding disorders called Steps for Living. Steps for Living builds on the success of the First Step program and will provide an outlet for families through which they can continue their education and involvement with their local chapter as their child grows and his/her needs change.
The Steps for Living curriculum will contain three different modules targeted at three separate age groups:
- First Step for ages 0-8
- Next Step for ages 9-15
- Stepping Out for ages 16-25
Steps for Living will target three main audiences: consumers, chapters and HTC staff, and will be further divided into topics of importance to each audience. First Step will focus on the basics of bleeding disorders, negotiating parent/provider relationships and childcare issues. Next Step will provide information about working with schools (legal rights, educating school staff, PE class, fieldtrips); gaining independence at home (transitioning to home infusions and on to self-infusions, limit setting, discipline, when to leave your child home alone); and healthy decision making (vacation/travel, organized sports, and nutrition). Stepping Out will cover topics such as disclosure, dating, career choices, moving away to college and treatment adherence.
There continue to be several areas related to women with bleeding disorders that need urgent attention. Through this cooperative agreement, NHF and the CDC will strive to: 1) raise awareness about von Willebrand disease (VWD) and other bleeding disorders that affect women; 2) educate providers outside of hematology to recognize and properly treat bleeding disorders in women; 3) connect women to HTCs; and 4) continue the success of Project Red Flag, a peer-education program for women with bleeding disorders.
In the future, a strong focus of NHF’s Women’s program will be to concentrate efforts on raising awareness among younger women and educating them about the symptoms of bleeding disorders, which can lead to early and accurate diagnoses. Secondly, NHF will focus on education by testing model programs that reach women with bleeding disorders in order to prevent or reduce complications and to improve overall quality of life.
During the first year of this new women’s initiative, NHF staff will work closely with the women’s task force to determine dissemination strategies of key messages, evaluate the woman-to-woman peer education program to develop effective best practices, and conduct focus groups with young women to create a peer education program that meets their needs.
For more information on the CDC cooperative agreement please contact:
Neil Frick, Vice President for Research & Medical Information (HANDI): 212.328.3708
Jennifer Crawford, Director of Education (Steps for Living): 212.328.3738
Kathleen Roach, Regional Director for Chapter Services (Women’s Initiative and general questions regarding the cooperative agreement): 920.691.6675.