Update Information for August 18, 2012 (V 2.31)

A new ECD-knowledgeable physician’s contact information was added to the “Physicians” page as follows:
Mark Heaney, MD, PhD
Memorial Sloan-Kettering Cancer Center
Weill Medical College of Cornell University
1275 York Ave.
New York, NY  10065  USA
Telephone:  212-639-2275
Fax:  212.772.8550
Email:  HeaneyM@mskcc.org

A new link as added to the “Resources | Links” page for Cancer Legal Resource Center (CLRC).  The CLRC provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.  The organization has indicated they are willing to support those affected by ECD.

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:

Juanós Iborra M, Selva-O’Callaghan A, Solanich Moreno J, Vidaller-Palacin A, Martí S, Grau Junyent JM, Vilardell Tarrés M
Erdheim-Chester disease: study of 12 cases [Spanish] Med Clin (Barc). 2012 Jul 11. [Epub ahead of print] Spanish

Lee HJ, Lee KY, Shin DY, Lee YG, Choi SY, Moon KC, Han IK, Kim TM
A case of erdheim-chester disease with asymptomatic renal involvement
Cancer Res Treat. 2012 Jun;44(2):146-50. Epub 2012 Jun 30

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 Blood.  The article is entitled, “High prevalence of BRAF V600E mutations in Erdheim-Chester disease but not in other non-Langerhans cell histiocytoses” and includes an abstract.
2. An article published in J Clin Oncol.  The article is entitled, “Tumor Necrosis Factor α As a Master Regulator of Inflammation in Erdheim-Chester Disease: Rationale for the Treatment of Patients With Infliximab” and does not include an abstract.  The work reported in this article was funded in part by the ECD Global Alliance.  To obtain a final grant report please email support@erdheim-chester.org.
3. An article published in Clin Exp Nephrol.  The article is entitled, “Image of Erdheim-Chester disease requiring hemodialysis” and does not include an abstract.
4. An article published in J Heart Valve Dis.  The article is entitled, “Postoperative cardiac homograft involvement in Erdheim-Chester disease” and includes an abstract.
5. An article published in Cancer Res Treat.  The article is entitled, “A case of erdheim-chester disease with asymptomatic renal involvement” and includes an abstract and free online access to the full length article.
6. An article published in Med Clin (Barc).  The article is entitled, “Erdheim-Chester disease: study of 12 cases” and includes an abstract and free online access to the full length article in Spanish.
7. An article published in Radiographics.  The article is entitled, “Tumorlike conditions of the pleura” and includes an abstract.

The “Grants” page was updated to include a final report for the 2011 grant awarded to Lorenzo Dagna, MD for the “Hypoxia and inflammation in Erdheim-Chester disease microenvironment: insights on the pathogenesis and implications for therapy” study.  An entry was also made to announce a 2012 grant was being awarded to Laurent Arnaud, MD, PhD and Dr Julien Haroche, MD, PhD for a study entitled, “Understanding dendritic cell lineages in Erdheim-Chester disease: towards a non-invasive diagnosis.”

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.