Update Information for Mar. 30, 2010 (V 2.3)

An update was made to the ‘ECD Global Alliance’ page to show the organization has been granted a tax exempt status under section 501(c)(3) of the US Internal Revenue Code.   This page was also updated to show the current number of patients represented by the organization.

The “Patient-to-Patient” page was modified to explain some of the links.  In addition, a link was provided to a form to allow patients and caregivers to participate in an ECD Networking Directory.

Two radiologists from the USA were added to the “Physicians” page.

A date was added to the “Case Locations” file to show the latest information regarding patients registered with the organization.

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

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 2010 Mar 16 in ”Int Urol Nephrol”.  The article is entitled, “Erdheim-Chester disease as cause of end-stage renal failure: a case report and review of the literature” and is without an abstract.
2. An article published 2010 Mar 10 in “Neurochirurgie”.  The article is entitled, “Histiocytic disorders with orbital involvement” and is without an abstract.
3. An article published 2010 Mar 4 in “Am J Surg Pathol”.  The article is entitled, “Erdheim-Chester Disease Presenting as Bilateral Clinically Malignant Breast Masses” and includes an abstract.
4. An article published 2010 Mar in “J Neurosurg Spine”.  The article is entitled, “Atypical spine involvement of Erdheim-Chester disease in an elderly male” and includes an abstract.
5. An article published 2009 Dec in “Vnitr Lek”.  The article is entitled, “Diabetes insipidus followed, after 4 years, with dysarthria and mild right-sided hemiparesis–the first clinical signs of Erdheim-Chester disease. Description and depiction of a case with a review of information on the disease” and includes an abstract.
6. An article published 2010 Jan;17 in “Adv Anat Pathol”.  The article is entitled, “Histiocytic disorders of the lung” and includes an abstract.

The NORD Rare Disease Day icon / selection was removed from the menu area.  Thank you to all who participated and helped to raise awareness of rare diseases and Erdheim-Chester Disease.