Genetic and Rare Diseases Information Center (GARD)


Other names people use for this condition
  • LCH
  • Histiocytosis X
  • Eosinophilic granuloma (formerly)
  • Letterer-Siwe disease (formerly)
  • Hand-Schüller-Christian syndrome (formerly)
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Home > Genetic & Rare Diseases Information Center (GARD) > Langerhans cell histiocytosis



Langerhans cell histiocytosis
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Langerhans cell histiocytosis is one of the three major classes of histiocytoses, a group of syndromes that involve an abnormal increase in the number of immune cells called histiocytes. It is suspected to be an autoimmune disease. The extra immune cells may form tumors, which can affect various parts of the body, especially the bones.[1] The underlying cause of the condition is unknown.[1][2] A variety of different factors are taken in consideration when determining the best treatment options for individuals with Langerhans cell histiocytosis.  


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More Detailed Information (Found 6 resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates
 
NLM Gateway (Found 1 resource)
A tool to search across multiple resources offered on the National Library of Medicine's Website

    • NLM Gateway allows users to search many resources offered on the National Library of Medicine's Web site at once to quickly find more information about this condition. Some of the resources may be a duplicate of the resources listed on this page. To search NLM Gateway, click on the link; the condition name will already be in the search box, so you can just click the “Search” button.
 
Scientific Conferences (Found 1 resource)
Completed and upcoming scientific conferences and programs that have been sponsored by the National Institutes of Health

  • Past Conferences

    • Adults with LCH - Orphans with an Orphan Disease, November 10, 2005 - November 11, 2005
      Location: Royal College of Physicians, London
      Description: Thanks to the energy of members of the Histiocyte Society, treatment trials in children with Langerhans Cell Histiocytosis (LCH) have been in progress since the late 1980s, but to date none have been carried out in adults.At present, therefore, there is no ‘evidence-base’ for managing adults with this disease. In the first session of this one and a half day meeting, the focus will be upon the ‘basic science’ of LCH and of normal dendritic cells; in the second session, adult and childhood LCH will be compared; and in the third, treatment options will be discussed. The final session, entitled ‘What do patients and families need?’, will embrace the views of patients, families, nurses and doctors and will conclude with recommendations about the principles of service delivery for this, and perhaps other, orphan diseases, and make specific recommendations for adults with LCH. A publication will follow shortly afterwards. The overall aim of the meeting is to highlight current deficiencies, then start to address them in the expectation that LCH in adults will soon be ‘de-orphanised’.
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Support Groups (Found 7 resources)
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  • Live Chat/E-mail Lists

    • The National Organization of Rare Disorders (NORD) has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community. This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more.
    • RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.
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Clinical Trials & Research (Found 2 resources)
Resources where you may find research studies and clinical trials

    • ClinicalTrials.gov lists trials that are studying or have studied Langerhans cell histiocytosis. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
    • The Research Portfolio Online Reporting Tool (RePORT) provides access to reports, data, and analyses of research activities at the National Institutes of Health (NIH), including information on NIH expenditures and the results of NIH-supported research. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies, click on the link and enter the disease name in the "Terms Search" box. Then click "Submit Query".
      Link: http://projectreporter.nih.gov/reporter.cfm

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