Update Information for December 16, 2012 (V 2.35)

The “ECD Studies” page was updated to include new studies and update information regarding existing studies.

The “What is ECD?” page was updated to include reported B-RAF inhibitors (vemurafenib) and Etanercept (trade name Enbrel) treatments.

The 2012 End-of-Year Newsletter was placed on the “What’s New?” page.

A link was added to the list of previously published articles, accessible without charge on the internet, as found on the “Technical Papers | Published Papers” page. It is:

Ceulemans G, Keyaerts M, Verbruggen L, Hoorens A, Boulet C, Verdries D, De Maeseneer M, Ilsen B, Everaert H
Erdheim-Chester disease detected with 99mTc MDP bone SPECT/CT  
JBR-BTR. 2012 Jul-Aug;95(4):245-8.

The “Physician” page was updated to show new contact information for Dr. Razelle Kurzrock and Dr. Mark Heany.

The “Patient-to-Patient” page was updated to include:

• A video from the 2012 Rare Disease Day at the NIH that included a visual section showing an ECD display
• An ariticle, Blind newlyweds take life in stride despite challenges, about Kit, an ECD patient, and her husband, Rich.

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

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