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AJPH First Look, published online ahead of print Sep 29, 2005
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AJPH.2004.051318v1
95/11/1910    most recent
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Judith R. Baker
Sally O. Crudder
Brenda Riske
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American Journal of Public Health, 10.2105/AJPH.2004.051318

Government, Politics, and Law

A Model for a Regional System of Care to Promote Health and Well Being for People with Rare Chronic Genetic Disorders

Judith R. Baker 1*, Sally O. Crudder 2, Ann Forsberg 3, Val Bias 4, Brenda Riske 5

1 Children's Hospital of Los Angeles
2 Centers for Disease Control and Prevention
3 UMASS Memorial Hospital
4 Compass Nonprofit Consulting Services
5 University of Colorado Health Sciences Center

* To whom correspondence should be addressed. E-mail: jbaker{at}chla.usc.edu.


  Abstract

Persons with rare, inherited chronic health conditions face added physical, social, emotional, and fiscal challenges beyond those that are common to more prevalent chronic conditions. A partnership among clinicians, consumers, and government agencies, initiated in the early 1970's, created a nationwide regional health delivery system that increased access to clinical care, prevention, and research, thereby improving health outcomes for persons with hemophilia in the U.S. Today over 130 comprehensive Hemophilia Diagnostic and Treatment Centers in twelve regions serve two thirds 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. However diverse and stable resources are needed to sustain this model in our profit oriented U.S. health care arena.

Key Words: Chronic Disease, Health Care Facilities/Services, Health Service Delivery, Surveillance




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