The five-year funding will help the NHF conduct programs for patients and healthcare providers related to inhibitor awareness, treatment for men with hemophilia, and therapies for women with bleeding disorders. Notably, inhibitors are antibodies that target clotting factors in hemophilia therapies, making them ineffective.
“We consider the CDC to be true partners of NHF,” Kate Nammacher, vice president for education at NHF, said in a press release. “The cooperative agreement allows us to collaborate with them and access their insight and expertise.”
Past cooperative agreements between the CDC and the NHF have funded a number of the foundation’s programs, such as Better You Know. That NHF outreach effort, aimed at undiagnosed women with bleeding disorders, also helps women and men connect with knowledgeable healthcare providers.
Guías Culturales, a peer support program for Spanish-speaking members of the bleeding disorders community, also was facilitated through CDC funding. That funding enables the guides (“guías”) to customize support for individual members, so that they can better understand and use available resources.
The NHF recently completed a CDC-supported needs assessment for Black and African American people with bleeding disorders. This assessment led to the creation of Bleeding Disorders and Black Communities, a private online community hosted by HealthUnlocked, a U.K.-based social health network.
Past CDC funds also have helped the NHF update the Playing It Safe book, which provides guidance on how to safely participate in sports and exercise for those with bleeding disorders. The foundation also created videos promoting inhibitor awareness.
With this new grant, the NHF intends to expand its Better You Know program to reach more people, with a goal of improving therapy adherence among men with bleeding disorders. The organization also plans to do more work to address health inequities that affect this patient community, among other projects.
“We’re establishing a health equity working group, which will look across all our educational programming with a health equity lens to identify key underserved communities and bring them into the planning process to best address their needs,” Nammacher said.
The new cooperative agreement will go into effect on Sept. 30.
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