Journal Article

Capacity Building for Rare Bleeding Disorders in the Remote Commonwealth of the Northern Mariana Islands

Baker, Judith R., Carhill, Pam, Huang, James N., Lin, Tiffany F.

2016

Overview

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.

• Publisher: American Public Health Association
• Subject: Air fares / AJPH Practice / Allied Health Personnel - education / Bleeding / Blood diseases / Capacity Building - methods / Capacity building approach / Capacity development / Community / Community involvement / Community Networks / Community support / Conferences / Continuing education / Curriculum / Disease / Disorders / Education / Educational Measurement - methods / Health Education / Hematology / Hemophilia / Hemophilia A - diagnosis / Hemophilia A - therapy / Humans / Islands / Leadership / Medical personnel / Micronesia / Palliative care / Patients / Physical therapists / Professionals / Public health / Rare diseases / Seminars / Sustainability / Sustainable development / Underserved populations / Vulnerable Populations