In 2023, the National Hemophilia Foundation (NHF) is celebrating two important milestones – its 75th Anniversary and a long-anticipated rebrand to better reflect the broader population of people living with inherited bleeding disorders that NHF serves (not just people with hemophilia, but those with many other related conditions).  The new name and branding will be announced at NHF’s upcoming Bleeding Disorders Conference in mid-August 2023. 

 

As part of this rebrand, NHF is seeking assistance to conduct a landscape analysis of patient, provider, and research organizations that represent the broader inherited blood disorder community and performing a SWOT analysis to assist NHF in updating its patient and provider education programs and advocacy efforts.  For example, we seek to identify all of the patient and provider organizations that serve people living with sickle cell disease and then analyze their activities and policy positions so NHF can identify points of alignment and divergence.  

 

NHF is especially looking for both opportunities where there are unrepresented people with bleeding and blood disorders whose challenges are similar to the bleeding disorders community with no patient advocacy organization, and where there are organizations with a particular strength or weakness to complement NHF.  

 

This project would be jointly managed by senior leadership at NHF and its federal policy consultants at the Artemis Policy Group (Artemis). 

 

Partnering with a Capstone group will give students experience in research and qualitative data analysis; strategic planning and SWOT analysis; policy analysis; understanding and evaluating non-profit programs; and exposure to leadership of leading patient organizations and lobbyists in DC.  

We anticipate that this project would have multiple phases: 

 

-          Interviews and information gathering from NHF leadership, department leaders and Artemis 

-          Review of previously gathered information about blood disorders landscape and organizations 

-          Analysis of identified organizations and their activities and policy positions by research and key informant interviews 

-          Production of research findings in excel and word

-          Strategic planning and SWOT analysis with NHF leadership as it expands its focus with this data in mind  

-          Draft final report with recommendations for NHF programmatic and policy opportunities 

This project will be a success when NHF has clearer, evidence-based directions for how its programs and policy activities should evolve in conjunction with the rebrand.  This can be measured by new opportunities and partners identified.