Update Information for November 3, 2012 (V 2.34)

The “Patient-to-Patient” page and the “Home” pages were modificed to add a link to a video featuring Walt Comer, an ECD patient.  Walt and his wife tell of their experiences of living with ECD.

The “How Can I Help?” page was updated to state that any ECD patient wishing to donate tissue for research is encouraged to contact the investigators at the NIH or Texas Children’s Hospital prior to a biopsy or surgery.  These same investigators can also be contacted to arrange for tissue donation for ECD research purposes upon death.

The “ECD Global Alliance” page now links to updated “Board of Directors” and “Staff” pages.  The ECD Global Alliance is pleased to announce the addition of Christina Baker to the staff.  Christina will be working with the organization to implement new projects and ensure current programs are sustainable.  Please join us in welcoming Christina who can be reached at Christina.Baker@erdheim-chester.org.

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 Joint Bone Spine.  The article is entitled, “Favorable radiological outcome of skeletal Erdheim-Chester disease involvement with anakinra” and includes an abstract.
2. An article published in J Clin Oncol.  The article is entitled, “Erdheim-Chester Disease Harboring the BRAF V600E Mutation” and does NOT include an abstract.
3. An article published in JBR-BTR.  The article is entitled, “Erdheim-Chester disease detected with 99mTc MDP bone SPECT/CT” and includes an abstract.
4. An article published in Intern Med.  The article is entitled, “Immunopathological analysis of erdheim-chester disease with massive ascites” and includes an abstract.
5. An article published in Hum Pathol.  The article is entitled, “Histiocytic disorders of the gastrointestinal tract” and includes an abstract.

Links were added to the list of previously published articles, accessible without charge on the internet, as found on the “Technical Papers | Published Papers” page. They  are:

Ota M, Sakamoto M, Sato K, Yoshida Y, Funakubo Asanuma Y, Akiyama Y, Yamakawa M, Mimura T.
Immunopathological analysis of erdheim-chester disease with massive ascites
Intern Med. 2012;51(19):2825-30. Epub 2012 Oct 1

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.