Executive Summary

The National Hemophilia Foundation (NHF) serves people with all bleeding disorders and their family members. They support research that will impact people’s lives, deliver education to help people with bleeding disorders thrive, and advocate for policies that protect access to healthcare. NHF serves all inheritable bleeding disorders, including Von Willebrand Disease (VWD). The primary health issue affecting the VWD community is lack of equitable care and information. VWD is the most common bleeding disorder and affects up to 1% of the general population (CDC, 2020). The disease occurs in both men and women equally, but women are more likely to notice symptoms because of abnormal bleeding during menstrual periods (CDC, 2021). Unfortunately, even though VWD is the most common inherited bleeding disorder, awareness among health care professionals is low (Sidonio, Zia, & Fallaiz, 2020). It is estimated that 35,000-387,000 patients may have symptomatic, undiagnosed VWD in the United States (Sidonio, Zia, & Fallaiz, 2020). This suggests that increased awareness and education of VWD, its symptoms, and recommended treatment would improve the quality of life of individuals living with VWD.

To increase awareness of VWD, its symptoms, and recommended treatments, NHF created a toolkit in 2019. However, in 2021, the guideline recommendations for the diagnosis and treatment of VWD were updated. Therefore, the internship projects included updating the VWD toolkit to reflect current guidelines and to create a promotion plan for the dissemination of the toolkit. Project goals (MPH goals) included increasing awareness of the effects of structural bias and racism on the diagnosis and treatment of VWD, to use communication strategies for different audiences, and to communicate an overview of the project. Associated objectives included writing an annotated bibliography and literature review to increase awareness of the determinants of health. The toolkit and promotion plan were created while considering different communication strategies. The final MPH objectives resulted in the creation of an executive summary and presentation on project deliverables. The community health competency goals included discovering barriers to health education and promotion, resulting in the creation of the literature review and presentation mentioned above. The final goal was to include perspectives and feedback on the toolkit from the priority population. Objectives included recruiting three individuals with VWD, an NHF education specialist, and an NHF expert in communications to provide feedback on the toolkit and to ensure that it met community needs.

After completion of the internship hours, the six project deliverables, and analysis of the organization some recommendations have been made to increase the capacity and reach of NHF. To address research gaps, more longitudinal studies should be done to observe change in efficacy of NHF programs and self-efficacy of seeking care. To better address determinants of health, initiatives such as phone buyback programs and Uber Health should be used to improve access for consumers. Policy initiatives should also consider capping the cost of internet connectivity to ensure access regardless of income level. Furthermore, hiring more persons of color in leadership positions will improve leadership capacity and promote inclusivity. These recommendations, and others included in the report, are meant to improve NHF’s capacity to engage with their target population and provide better access to resources to support the community.