IDEAS home Printed from https://ideas.repec.org/a/aph/ajpbhl/10.2105-ajph.2004.051318_7.html
   My bibliography  Save this article

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

Author

Listed:
  • Baker, J.R.
  • Crudder, S.O.
  • Riske, B.
  • Bias, V.
  • Forsberg, A.

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.

Suggested Citation

  • Baker, J.R. & Crudder, S.O. & Riske, B. & Bias, V. & Forsberg, A., 2005. "A model for a regional system of care to promote the health and well-being of people with rare chronic genetic disorders," American Journal of Public Health, American Public Health Association, vol. 95(11), pages 1910-1916.
    • Handle: RePEc:aph:ajpbhl:10.2105/ajph.2004.051318_7
    DOI: 10.2105/AJPH.2004.051318
    as

    Download full text from publisher

    File URL: http://hdl.handle.net/10.2105/AJPH.2004.051318
    Download Restriction: no
    File URL: https://libkey.io/10.2105/AJPH.2004.051318?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    More about this item

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:aph:ajpbhl:10.2105/ajph.2004.051318_7. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    We have no bibliographic references for this item. You can help adding them by using this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Christopher F Baum (email available below). General contact details of provider: https://www.apha.org .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.