ASSESSING PATIENT ADVOCACY WITHIN THE BLOOD AND BLEEDING DISORDER COMMUNITY

The National Bleeding Disorders Foundation (NBDF) is an advocacy group supporting individuals with hereditary blood and bleeding disorders. NBDF has worked on a rebranding initiative to extend its reach within the blood and bleeding disorder community. The client enlisted the Capstone team to identify gaps in patient support, provider education, policy, and advocacy across 31 blood and bleeding disorders in order to identify areas of potential expansion for NBDF. The team conducted a landscape analysis to find existing services and organizations representing these disorders. The team also distributed a survey during NBDF’s Washington Days and on social media to gather qualitative data identifying critical service needs. The team’s findings show significant service gaps in advocacy, patient education, and medical education across several rare disorders. The team’s report includes recommendations to broaden and diversify NBDF’s reach and offerings. Supplementary tools in the report include a list of potential grant funding opportunities to help facilitate this expansion.