Update Information for April 24, 2013(V 2.38)

The “Home” page was updated to provide a link for medical professionals to register for the ECD Medical Symposium to be held on October 31, 2013 in San Diego, California.

The “Home” page was updated to provide a link for patients and family members to register for the ECD Patient and Family Gathering to be held on November 1-2, 2013 in San Diego, California.

• Register WITHOUT financial assistance.
• Register WITH financial assistance. 

The “Patient-to-Patient” and “Home” pages were updated to add a link to the RareConnect website that provides a space for the ECD community to share their stories and communicate via a safe, social media-like website.  Patients and their loved ones are encouraged to join this community.

The “Physicians” page was updated to correct contact information for Dr. Mark Heaney ofColumbia University Medical Center.  Contact information was also added for the following doctors who treat ECD patients and are interested in learning more about the disease.

• Dr. Eli Diamond of Sloan Kettering in New Your, New York
• Dr. Filip Janku MD of MD Anderson in Houston, Texas
• Dr. David Hyman of Sloan Kettering in New York, New York
• Dr. Javier Munoz at Banner MD Anderson in Gilbert, Arizona

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 Ann Rheum Dis.  The article is entitled, “Erdheim-Chester disease” and does not include an abstract.
2. An article published in Clin Imaging.  The article is entitled, “Suprasellar non-Langerhans cell histiocytosis (Erdheim-Chester disease)-a case report” and includes an abstract.
3. An article published in Med Clin (Barc).  The article is entitled, “Erdheim-Chester disease: Report of a case with retroperitoneal involvement treated with interferon alpha-2a” and does not include an abstract.
4. An article published in Diagn Cytopathol.  The article is entitled, “Erdheim-Chester Disease With Prominent Pericardial Effusion: Cytologic Findings and Review of the Literature” and includes an abstract.
5. An article published in Diagn Interv Imaging.  The article is entitled, “Erdheim-Chester disease: A rare diagnosis with evocative imaging” and does not include an abstract.
6. An article published in Ann Rheum Dis.  The article is entitled, “The multifaceted clinical presentations and manifestations of Erdheim-Chester disease: comprehensive review of the literature and of 10 new cases” and includes an abstract.
7. An article published in Cerebellum.  The article is entitled, “A Rare Cause of Late-Onset Cerebellar Ataxia: Erdheim-Chester Disease” and does not include an abstract.

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.