Update Information for June 14, 2012 (V 2.29)

The contact information for Dr. Kleanthis Manousaridis, an ophthalmologist, was updated on the “Physicians” page.

The link to the Retroperitoneal Fibrosis support group, as found on the “What is ECD?” page, was updated to http://health.groups.yahoo.com/group/retroperitoneal_fibrosisworldsupport/)

A link was added for Liam’s Lighthouse Foundation, an organiation dedicated to advancing research, awareness, and support for Hemophagocytic Lymphohistiocytosis (HLH) and Histiocytic Disorders.

The list of Board Members of the ECD Global Alliance, as found on the “ECD Global Alliance” page, was updated to show that Ralph Stallard and Brian Lestage have resigned from the Board of Directors.  Ralph and Brian are thanked for all the passion and hard work they gave to the organization during its formation.  We are thankful for their tenure on the Board and wish them all the best.

The blog, “A Journey Through The Maze of Rare Illness” was removed from the list of blogs found on the “Blogs and eGroups” page as the blog is no longer available for viewing.

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.

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 Brain Pathol.  The article is entitled, “A 38-year old woman with a dural based lesion” and includes an abstract.
2. An article published in Vnitr Lek in Czech.  The article is entitled, “Interleukin-1 receptor blockade with anakinra provided cessation of fatigue, reduction in inflammation markers and regression of retroperitoneal fibrosis in a patient with Erdheim-Chester disease – case study and a review of literature” and includes an abstract.
3. An article published in Indian Heart J.  The article is entitled, “Recurrent and rapidly occurring pericardial tamponade in Erdheim Chester disease” and includes an abstract.
4. An article published in Clin Radiol.  The article is entitled, “Neoplastic and proliferative disorders of the perinephric space” and includes an abstract.
5. An article published in Orbit.  The article is entitled, “Unusual Orbital Involvement in Erdheim Chester Disease: A Radiological Diagnosis” and  includes an abstract.
6. An article published in J Neurol.  The article is entitled, “Erdheim-Chester disease presenting with an intramedullary spinal cord lesion” and does not include an abstract.

Additions were made to the keywords associated with the website in an attempt to help those searching for a diagnosis.