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. 2005 Nov;95(11):1910-6.
doi: 10.2105/AJPH.2004.051318. Epub 2005 Sep 29.

A model for a regional system of care to promote the health and well-being of people with rare chronic genetic disorders

Judith R Baker  1 , Sally O Crudder, Brenda Riske, Val Bias, Ann Forsberg
Affiliations

A model for a regional system of care to promote the health and well-being of people with rare chronic genetic disorders

Judith R Baker et al. Am J Public Health. 2005 Nov.

Abstract

People with rare, inherited chronic health conditions, such as hemophilia, face added physical, social, emotional, and fiscal challenges beyond those that are common to more prevalent chronic conditions. In 1975, a partnership among clinicians, consumers, and government agencies created a nationwide regional health delivery system that increased access to clinical care, prevention, and research, thereby improving health outcomes for people with hemophilia in the United States. Today, more than 130 Comprehensive Hemophilia Diagnostic and Treatment Centers in 12 regions serve 70%-80% of the nation's hemophilia patients. Health care leaders and advocates for other rare, expensive, chronic disorders may find that regionalization improves survival and reduces disability among affected populations. However, diverse and stable resources are needed to sustain such a model in our profit-oriented US health care arena.

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Figures

FIGURE 1—
FIGURE 1—
Outcomes of comprehensive care at US hemophilia treatment centers.
FIGURE 2—
FIGURE 2—
US Hemophilia Treatment Center regions.
FIGURE 3—
FIGURE 3—
Comprehensive hemophilia care components.
FIGURE 4—
FIGURE 4—
US Department of Health and Human Services roles in hemophilia.
See this image and copyright information in PMC

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