National Hemophilia Foundation Launches Collaboration in Care

Curriculum
Novo Nordisk is partnering with the National Hemophilia Foundation through
a new grant program that will address lifestyle issues in the hemophilia and
rare bleeding disorders community. The initial global and US quantitative
HERO (Hemophilia Experiences, Results, and Opportunities) 2012 survey
data highlighted a major gap in education, access to comprehensive care,
and pain assessment in the hemophilia community. The National Hemophilia
Foundation recognized this as an opportunity to launch its Collaborating in
Care curriculum.
The curriculum seeks to close that knowledge gap by educating people with
hemophilia and their support network about the comprehensive
management of hemophilia to maximize the quality of their daily lives.
Hemophilia affects approximately 18,000 Americans and with poor
management habits those patients at increased risk of morbidity and even
mortality. With this program, we strive for stronger hemophilia
management habits among patients and their support systems, said Christa
Dardaganian,(insert position title).
Liz ONeil, medical affairs senior manager quote providing NHF with resources
and research to do specific actionable implementation.
This educational curriculum will include six modules delivered to the network
of 51 NHF chapters. Each module will focus on a specific learning topic and
contains 10 activities. An average of 50 participants will engage in each
activity, having the curriculum reach roughly 3,000 learners.
NHF scheduled to release the first module centered on pain management at
the annual meeting in September. Chapters can check for subsequent
module releases as well as schedule specific activities through the NHF
website.
NHF will evaluate the effectiveness of these modules and the educational
outcome based on the individual sessions, the module as a whole, the
aggregate modules, and a long term study. The results will be closely
analyzed to ensure this series of educational activities does provide
comprehensive support of the patients with hemophilia.