News for Apr. 21, 2009 (V 1.1.11)

A new entry was made to the ‘ECD Studies’ selection.  Dr. Augusto Vaglio from Italy has provided the protocol he is using in a pilot study for treatment of ECD with sirolimus and prednisone.

The latest ECD Newsletter, Issue 2, March 2009, was added to the  News/Update page.

Another physician, a nephrologist at Johns Hopkins, was added to the Physicians page.

The ‘Case Locations’ and ‘Case Log’ were updated on the Patient to Patient page.  This reflects new patients who have joined the group since the last update and corrected a couple entries that we learned were listed incorrectly.

An update was made to the Technical Papers | Published Papers.  A new paper entitled, “Symmetric giant xanthogranulomas in Erdheim-Chester disease” was added to the list.  Other links to published papers were repaired where necessary.

A new link, to RxAssist, was added to the Resources | Links page.  This website provides information about patient assistance programs as provided by pharmaceutical companies.  For those people who qualify, these programs provide free medication to those who cannot afford to pay for the medication.

An update was made to the ‘ECD Global Alliance’ page to show the increase in number of ECD patients represented by the ECD Global Alliance.

New chat summaries were added to the Chat Room page.  Some simple wording changes were also made to the text that appears on the Chat Room page.   (3-21-09,  4-4-09, 4-11-09)

An update was made the Technical Papers | Abstracts of Published Papers.

The home page was modified to show that ECD is often referred to as a non-Langerhans-cell histiocytosis.