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Capacity Building for Rare Bleeding Disorders in the Remote Commonwealth of the Northern Mariana Islands
Tiffany F Lin1, Pam Carhill1, James N Huang1
1Tiffany F. Lin and James N. Huang are with the Department of Pediatrics, and the Benioff Children's Hospital, University of California, San Francisco. Tiffany F. Lin is also with Commonwealth Healthcare Corporation, Saipan, Northern Mariana Islands. Pam Carhill is with Marianas Health, Saipan, Northern Mariana Islands. Judith R. Baker is with the Center for Inherited Blood Disorders, Orange, CA and the Division of Pediatric Hematology/Oncology, University of California, Los Angeles.
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 time-concentrated 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.