Update Information for March 17, 2014 (V 2.46)

The “Main” page was updated to include information about

1. The 2nd Annual International ECD Patient and Family Gathering to be held in Bethesda, Maryland USA, on September 19-20, 2014.
2. The 2nd Annual International ECD Medical Symposium to be held in Bethesda, Maryland USA on September 18, 2014.

The “ECD Studies” page was updated to provide more information about the vemurafenib clinical trial currently accepting ECD patients in a few locations.

The Case Locations as found on the “Patient-to-Patient” and “ECD Global Alliance” pages, were updated.

The “Patient-to-Patient” page was updated to include some new news articles that were published about ECD and the patients who live with the disease.

Difficult to diagnose disorders gain support

A newspaper article written about Leslie Adler, and her experiences living with ECD.

Bonnie Schulz faces the Erdheim-Chester Disease

A picture and story (story not available online) about Bonnie Schulz, a patient living with ECD.

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 Curr Rheumatol Rep.  The article entitled, “Erdheim-chester disease”, includes an abstract.
2. An article published in Endocrine.  The article entitled, “Surgical biopsies in patients with central diabetes insipidus and thickened pituitary stalks”, includes an abstract.
3. An article published in Jpn J Radiol.  The article entitled, “Erdheim-Chester disease with an 18F-fluorodeoxyglucose-avid breast mass and BRAF V600E mutation”, includes an abstract.
4. An article published in Acta Otorrinolaringol Esp.  The article entitled, “Erdheim-Chester disease in a sinonasal location”, does not include an abstract.
5. An article published in Blood Cells Mol Dis.  The article entitled, “BRAF – A new player in hematological neoplasms”, includes an abstract.
6. An article published in Arthritis Care Res (Hoboken).  The article entitled, “New insights in pathogenesis of Erdheim-Chester disease”, does not includes an abstract.
7. An article published in Arthritis Care Res (Hoboken).  The article entitled, “Vemurafenib in Erdheim-Chester disease”, does not include an abstract.
8. An article published in Dermatol Online J.  The article entitled, “Pineal gland involvement in Erdheim-Chester disease detected on 18F-FDG PET-CT imaging: a case report and review of literature”, includes an abstract.

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