Update Information for September 20, 2013 (V 2.42)

New physicians,familiar with ECD, were added to the “Physicians” page.  Their information is as follows:

Ronald Go, MD
Mayo Clinic
Department of Hematology
200 First Street SW
Rochester, MN 55905  USA
Telephone:  507-284-2176
e-mail: go.ronald@mayo.edu

Prof. Claudio Doglioni, MD
Unit of Pathology
San Raffaele Scientific Institute
Università Vita-Salute San Raffaele School of Medicine Via Olgettina, 60
20132 Milano, ITALY
Telephone:  +39 02 2643 2451
Fax:  +39 02 2643 2409
e-mail: doglioni.claudio@hsr.it

An updated phone number was provided for Dr. Razelle Kurzrock and Prof. Lorenzo Dagna on the “Physicians” page.  Dr. Kurzrock’s new phone number is +1-858-246-1102.  Prof. Dagna’s new phone number is +39 02 91751545.

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 Neurology.  The article is entitled, “Teaching NeuroImages: Ataxia and diabetes insipidus” and includes an abstract.
2. An article published in Rheumatology (Oxford).  The article is entitled, “TNF-α in Erdheim-Chester disease pericardial effusion promotes endothelial leakage in vitro and is neutralized by infliximab” and does not include an abstract.
3. An article published in Blood.  The article is entitled, “Detection of an NRAS mutation in Erdheim-Chester disease” and does not include an abstract.
4. An article published in Joint Bone Spine.  The article is entitled, “Successful treatment of Erdheim-Chester disease by interleukin-1 receptor antagonist protein” and includes an abstract.
5. An article published in Orphanet Journal of Rare Diseases.  The article is entitled, “Erdheim-Chester Disease: a comprehensive review of the literature” and includes an abstract.

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

Romain Lefaucheur, David Maltête, Julien Haroche, et al.
Teaching NeuroImages: Ataxia and diabetes insipidus
Neurology. 2013 Jul 16;81(3):e19.

Roei D Mazor, Mirra Manevich-Mazor, Yehuda Shoenfeld
Erdheim-Chester Disease: a comprehensive review of the literature
Orphanet Journal of Rare Diseases.  2013 Sept 8, 8:137

The “Patient Log” as found on the “Patient to Patient” page was updated to include the history of an other ECD patient.  Anyone who would like to submit their history for the patient log is asked to contact the organzation at support@erdheim-chester.org.

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

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

The “Grants” page was modified to state that the 2013 $50,000 ECD research grant was awarded to Omar Abdel-Wahab, MD, David Hyman, MD, and Eli Diamond, MD from Memorial Sloan-Kettering Cancer Center in New York, New York for the study described as, “Somatic Genetic Alterations in the Pathogensis and Therapy of Histicytic Disorders”.  The organization will be awarding one or more grants in 2014.  If you have an interest in submitting a proposal for the 2014 grant, please emaill support@erdheim-chester.org.