HOME HELP FEEDBACK SUBSCRIPTIONS ARCHIVE SEARCH TABLE OF CONTENTS		QUICK SEARCH:   [advanced] Author: Keyword(s): Year:  Vol:  Page:

This Article Figures Only Full Text Full Text (PDF) All Versions of this Article: AJPH.2004.051318v1 95/11/1910    most recent Submit a response Purchase Article View Shopping Cart Alert me when this article is cited Alert me when eLetters are posted Alert me if a correction is posted Services Similar articles in this journal Similar articles in ISI Web of Science Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Citing Articles Citing Articles via HighWire Citing Articles via ISI Web of Science (4) Citing Articles via Google Scholar Google Scholar Articles by Baker, J. R. Articles by Forsberg, A. Search for Related Content PubMed PubMed Citation Articles by Baker, J. R. Articles by Forsberg, A. Related Collections Other Chronic Disease Health Care Facilities/Services Other Health Service Delivery Surveillance

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.

Correspondence: Requests for reprints should be sent to Sally Crudder, Division of Hereditary Blood Disorders, National Center on Birth Defects and Developmental Disabilities, CDC, 1600 Clifton Road, MS E 64, Atlanta, GA 30333 (email: scrudder{at}cdc.gov).

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.

This article has been cited by other articles:

				S. D. Grosse, M. S. Schechter, R. Kulkarni, M. A. Lloyd-Puryear, B. Strickland, and E. Trevathan Models of Comprehensive Multidisciplinary Care for Individuals in the United States With Genetic Disorders Pediatrics, January 1, 2009; 123(1): 407 - 412. [Abstract] [Full Text] [PDF]

				M. J. Manco-Johnson, T. C. Abshire, A. D. Shapiro, B. Riske, M. R. Hacker, R. Kilcoyne, J. D. Ingram, M. L. Manco-Johnson, S. Funk, L. Jacobson, et al. Prophylaxis versus Episodic Treatment to Prevent Joint Disease in Boys with Severe Hemophilia N. Engl. J. Med., August 9, 2007; 357(6): 535 - 544. [Abstract] [Full Text] [PDF]

				C. A. Boyle and J. F. Cordero Birth Defects and Disabilities: A Public Health Issue for the 21st Century Am J Public Health, November 1, 2005; 95(11): 1884 - 1886. [Full Text] [PDF]