Twenty participants attending an advocacy webinar typed the words “I COMMIT” on a zoom video call in 2020. The commitment was part of a call-to-action for a two-part advocacy training webinar series organized by the World Federation of Hemophilia (WFH) in collaboration with the Haemophilia Foundation of Nigeria (HFN). The webinar—part of the WFH Global Alliance for Progress (GAP) Program—was designed to encourage introspection, reflection and re-energization in participants.
Nigeria has been enrolled in the WFH GAP Program since 2020, and the HFN and the WFH collaborated to develop a five-year action plan using the WFH Comprehensive Development Model. This model is designed to work with the healthcare system, government, and social infrastructure of the recipient country to maximize the use of existing resources and to achieve long-term sustainable care and treatment for people with hemophilia and other rare bleeding disorders.
One of the year’s objectives was to expand the presence of the HFN in different regions by establishing “chapters” and creating a sustainable governance structure to support patients and families. These chapters would be empowered to undertake outreach and advocacy initiatives, and enhance access to care. Unfortunately, COVID-19 impacted these efforts dramatically. Plans for face-to-face training quickly shifted to planning for virtual training. A survey was given to members targeting patients, family members, health care teams and volunteers. The responses were used to design a two-part training program held in August and September which helped participants understand how the HFN meets their needs—specifically related to aligning individual and organizational values and the vision and strategic plan of the HFN.