Capacity building for rare bleeding disorders in the remote commonwealth of the northern Mariana Islands

T.F. Lin, P. Carhill, J.N. Huang and J.R. Baker

American Journal of Public Health, 2016, vol. 106, issue 4, 658-661

Abstract: The US Pacific Commonwealth of the Northern Mariana Islands is home to an underserved hemophilia population. We developed a strategy in 2014 to build sustainable island-wide medical, patient and family, and community support for this rare disease. Collaboration with regional bleeding disorder leadership galvanized a weeklong conference series. More than 200 participants attended discipline-specific seminars; pre-post test evaluations documented educational benefits. This timeconcentrated island-wide education intervention promoted the rapid identification of new cases and stimulated sustainable bleeding disorder care development. The education series proved feasible, efficient, and effective in increasing knowledge and reducing patient and professional isolation, serving as a model for improving capacity for orphan diseases (those that affect fewer than 200 000 people in any particular country) in underresourced areas.

Keywords: capacity building; community care; curriculum; education; Federated States of Micronesia; health education; hemophilia A; human; paramedical personnel; procedures; vulnerable population, Allied Health Personnel; Capacity Building; Community Networks; Curriculum; Educational Measurement; Health Education; Hemophilia A; Humans; Micronesia; Vulnerable Populations (search for similar items in EconPapers)
Date: 2016
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Persistent link: https://EconPapers.repec.org/RePEc:aph:ajpbhl:10.2105/ajph.2016.303093_2

DOI: 10.2105/AJPH.2016.303093

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