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.