title: A model for a regional system of care to promote the health and well-being of people with rare chronic genetic disorders.
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.
authors.affiliation: Federal Hemophilia Treatment Centers/Region IX, Children's Center for Cancer and Blood Disorders, Childrens Hospital Los Angeles, CA, USA.
authors.forename: Judith R
authors.initials: JR
authors.lastname: Baker
authors.forename: Sally O
authors.initials: SO
authors.lastname: Crudder
authors.forename: Brenda
authors.initials: B
authors.lastname: Riske
authors.forename: Val
authors.initials: V
authors.lastname: Bias
authors.forename: Ann
authors.initials: A
authors.lastname: Forsberg
mesh_terms: D002908:Chronic Disease; D003256:Community Participation; D003191:Comprehensive Health Care / Q000458:organization & administration*; D030342:Genetic Diseases, Inborn / Q000628:therapy*; D006293:Health Promotion / Q000458:organization & administration*; D006297:Health Services Accessibility; D006467:Hemophilia A / Q000628:therapy; D006801:Humans; D007373:Interinstitutional Relations; D012040:Regional Health Planning / Q000458:organization & administration*; D014481:United States