Update Information for January 31, 2012 (V 2.25)

Information was added to the home page explaining that tissue samples of ECD lesions/tumors are being requested.  Studies being conducted at the National Institutes of Health (NIH) and Texas Children’s Hospital need these samples as part of their research into the cause and possible treatments of ECD.  Any patient planning surgery at the site of an ECD lesion/tumor is asked to contact the organization (support@erdheim-chester.org), or the principal investigator of the NIH ECD Study or the Texas Children’s Hospital Histiocytosis Study.

A link was added to the list of previously published articles, accessible without charge on the internet, as found on the “Technical Papers | Published Papers” page.  It is:

1. Vega J, Cisternas M, Bergoeing M, Espinosa R, Zapico A, Chadid P, Santamarina M.
   Erdheim-Chester disease. Report of one case
   Rev Med Chil. 2011 Aug;139(8):1054-9. Epub 2011 Dec 20. Spanish

New entries were made to the “Abstracts of Published Papers” as listed under the “Technical Papers” selection for recently published papers. The additions are as follows:

1. An article published in the Rev Med Chil.  The article is entitled, “Erdheim-Chester disease. Report of one Case” and includes an abstract.
2. An article published in the Clin Nucl Med.  The article is entitled, “F-18 FDG PET/CT Detects Muscle Involvement in Erdheim-Chester Disease ” and includes an abstract.
3. An article published in the Nihon Naika Gakkai Zasshi.  The article is entitled, “Case report; a case of cardiac tumor diagnosed with Erdheim-Chester disease” and does not include an abstract.
4. An article published in the Cytojournal.  The article is entitled, “Cytomorphology of Erdheim-Chester disease presenting as a retroperitoneal soft tissue lesion” and includes an abstract.

Information on the “How Can I Help?” page was updated to reflect the organization is now proud to have a staff member who is in charge of organizational development.

The Case Locations as found on the “Patient-to-Patient” and “ECD Global Alliance” pages, was updated.

Chat summaries were added to the “Chat Room” page.