News for Sep. 14, 2009 (V 1.1.15)

An announcement was made on the ECD Global Alliance page that the organization is in the process of obtaining an official non-profit status from the US government.  This will allow the organization to begin raising funds to help fund the mission of the organization.  This includes hopefully funding ECD-related research, improving the organization’s support role to those affected by ECD, helping to raise awareness of ECD and providing informational and educational material to interested individuals.

A nuclear medicine/radiologist from Switzerland was added to the Physicians page.

A new entry was added to the “Technical Papers | Medical Journal Articles” page.  It is:

Roldan Martinez

Erdheim-Chester Disease: MR of Intraaxial and Extraaxial Brain Stem Lesions.

AJNR 16:1787-1790, Oct 1995 0195-6108/95/1609-1787

An update was made to the “ECD Global Alliance” page to document how the organization began with the collaboration of 3 caregivers to ECD patients (Carol, Kathy & RuthAnn).

New chat summaries were added to the Chat Room page.

An update was made to the “ECD Global Alliance” page to show the organization now represents 52 ECD cases from around the world.

An update was made to the “Patient-to-Patient | Case Locations” page to show the addition of a new case that was registered with the organization.

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

1. A paper published on July 20, 2009 in the journal, American Journal of Surgical Pathology.  The article is entitled, “Distinctive Pulmonary Histopathology With Increased IgG4-positive Plasma Cells in Patients With Autoimmune Pancreatitis: Report of 6 and 12 Cases With Similar Histopathology” and includes an abstract.
2. A paper published on July 27, 2009 in the journal, Joint Bone Spine.  The article is entitled, “Spumous histiocytic oligoarthritis coexisting with systemic Langerhans’ cell histiocytosis: Case report and literature review” and includes an abstract.
3. A paper published on August 11, 2009 in the journal, Leukemia Research.  The article is entitle, “Erdheim-Chester disease: Multisystem involvement and management with interferon-alpha” and is without abstract.
4. A paper published in September 2009 in the journal, Clinical Nuclear Medicine.  The article is entitled, “Intensely hypermetabolic extra-axial brainstem tumor in Erdheim-chester disease” and includes an abstract.

An update was made to the “Technical Papers | Medical Journal Articles” page to show that there are now 319 published papers on Erdheim-Chester Disease listed in the PubMed database.