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AJPH First Look, published online ahead of print Sep 29, 2005
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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, MHSA, Sally O. Crudder, BSN, Brenda Riske, MS, MBA, MPA, Val Bias and Ann Forsberg, MA, MPH

Judith R. Baker is with the Federal Hemophilia Treatment Centers/Region IX, Children’s Center for Cancer and Blood Disorders, Childrens Hospital Los Angeles, Calif. Sally O. Crudder is with the Division of Hereditary Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Ga. Brenda Riske is with the Mountain States Regional Hemophilia and Thrombosis Center at the University of Colorado at Denver & Health Sciences Center, Denver. Val Bias is with the Hemophilia Council of California, Sacramento, Calif. Ann Forsberg is with the New England Hemophilia Center at the University of Massachusetts Memorial Hospital, Worcester, Mass.



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  		FIGURE 1—— Outcomes of comprehensive care at US hemophilia treatment centers.

 


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  		FIGURE 2—— US Hemophilia Treatment Center regions.

 


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  		FIGURE 3—— Comprehensive hemophilia care components.

 


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  		FIGURE 4—— US Department of Health and Human Services roles in hemophilia.

 




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