Update Information for February 28, 2011 (V 2.14)

The Patient-to-Patient page was modified to add links to two newspaper articles about ECD Patients:  POKIN AROUND: Cottleville, Missouri couple blindsided by rare, deadly disease  and Almost Alone:  Jefferson County man is one of the few with Erdheim-Chester Disease.  Another link was added to this page pointing to an article, entitled First Annual Gary Brewer Memorial Run planned, about a high school senior who is raising money for ECD research.

The Blogs and eGroups page as found under the Patient-to-Patient page was also modified to add links to another ECD patient’s blog entitled Minkey’s Place.

An ECD-knowledgeable physician’s contact information in Slovakia was added to the  “Physicians” page.

The Case Locations and Case Log, as found on the “Patient-to-Patient” page, was updated.

A number of pages had keywords updated to help search engines find the website and its contents easier.

A link was added to the Links page for SORD, a Japanese support group for patients and their families affected by rare diseases.

An Entry was made to the “Abstracts of Published Papers” as listed under the “Technical Papers” selection for recently published papers. The addition is as follows:

  1. An article published in the Journal of Neuroophthalmology.  The article is entitled, “Presence of Erdheim-Chester Disease and Langerhans Cell Histiocytosis in the Same Patient: A Report of 2 Cases ” and includes an abstract.

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

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