Update Information for May 12, 2013 (V 2.39)

The “What is ECD?” page was updated to show that some male ECD patients having abnormally low levels of testosterone have reported feeling better after being placed on Testosterone Replacement Theraphy.

The “Physicians” page was updated to add contact information for Dr. Juvianee Estrada-Veras at the National Institutes of Health (NIH) and to update the contact information for Dr. Robert Arceci at Pheonix Childern’s Hospital.

The member listing of the ECD Global Alliance Medical Advisory Board was updated as found on the “ECD Global Alliance” page.

The member listing of the ECD Global Alliance Board of Directors was updated as found on the “ECD Global Alliance” page.

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 Ann Rheum Dis.  The article is entitled, “Diagnosing Erdheim-Chester disease” and does not include an abstract.
2. An article published in the BMJ Case Rep.  The article is entitled, “Erdheim-Chester disease with isolated craniocerebral involvement” and includes an abstract.
3. An article published in the Rheum Dis Clin North Am.  The article is entitled, “Erdheim-chester disease” and includes an abstract.
4. An article published in the Clin Nucl Med.  The article is entitled, “18F-Fluoride PET/CT Aspect of an Unusual Case of Erdheim-Chester Disease With Histologic Features of Langerhans Cell Histiocytosis” and includes an abstract.
5. An article published in the Clin Nucl Med.  The article is entitled, “FDG PET Images in a Patient With Erdheim-Chester Disease” and includes an abstract.

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

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