The National Hemophilia Foundation collaborates with CDC through a Cooperative Agreement to provide credible health information and evidence-based training, as well as to implement and evaluate evidence-based health promotion and education programs aimed at reducing or preventing complications of hemophilia and von Willebrand disease. Through the cooperative agreement, we are working on projects to better understand the needs of patients, families, healthcare providers, and the general public in the areas of treatment, inhibitor development, and women with bleeding disorders. The goals of these projects are:
- Increase knowledge and awareness about the benefits of prophylactic treatment regimens by patients, families, and hematology providers. The goal is for this to lead to increased adherence to prophylactic treatment regimens.
- Increase knowledge and awareness of novel treatment products for patients and hematology providers
- Increase knowledge and awareness about risk factors and routine screening for inhibitors by patients, their families, and hematology providers.
- Increase number of patients who are at risk for inhibitor development receiving screening for inhibitors
- Women with Bleeding Disorders
- Increase knowledge and awareness about the signs, symptoms, and diagnosis of bleeding disorders in women among women and girls, hematology providers, and general healthcare providers. The goal is for this to lead to an increased number of women and girls who are referred for diagnosis and clinical management of a bleeding disorder.
- Increase knowledge and awareness of best treatment practices for women with bleeding disorders among hematology providers and women diagnosed with a bleeding disorder.
In past cooperative agreements with CDC, NHF developed campaigns such Better You Know for undiagnosed women, inhibitor screening awareness, and Do the Five.