Update Information for July 31, 2011 (V 2.19)

An annoucement about a matching donation opportunitywas place on the “Main” page.  All donations, up to $50,000, made between July 23, 2011 and January 1, 2012, will be matched thanks to a generous private donation.  If you donate $10, the organization will receive $20, thanks to your donation and the matching donation.  What a great way to maximize your help!  Please mail checks to
ECD Global Alliance
P.O. Box 775
DeRidder, LA  70634

The Case Locations as found on the “Patient-to-Patient” page, was updated.

The Case Log as found on the “Patient-to-Patient” and “ECD Global Alliance” page, was updated and corrections made to the diagnosis date for some of the first patients to register with our organization.  (For anyone wishing to add or update their information, please email the information to support@erdheim-chester.org.

A job opening announcement for an ECD Global Alliance Development Director was placed on the “Main” page.

A “How To Guide” for hosting a fun run fundraiser was placed on the “Resources” page.

New links weree 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:

1. Murakami Y, Wataya-Kaneda M, Terao M, Azukizawa H, Murota H, Nakata Y, Katayama I.
   Peculiar distribution of tumorous xanthomas in an adult case of erdheim-chester disease complicated by atopic dermatitis
   Case Rep Dermatol. 2011 May;3(2):107-12. Epub 2011 May 17.
2. Pan A, Doyle T, Schlup M, Lubcke R, Schultz M.
   Unusual Manifestation of Erdheim-Chester Disease
   BMC Gastroenterol. 2011 Jun 22;11(1):77
3. Kevin Andrysek
   Erdheim-Chester Disease – A Case Study and Literature Review
   DIMENS CRIT CARE NURS. 2011;30(4):184/189
4. Aurélie Drier, Julien Haroche, Julien Savatovsky, Gaelle Godenèche, Didier Dormont, Jacques Chiras, Zahir Amoura, Fabrice Bonneville
   Cerebral, Facial, and Orbital Involvement in Erdheim-Chester Disease: CT and MR Imaging Findings
   Radiology. 2010 May;255(2):586-94
5. Botelho A, Antunes A, Almeida JC, Abecasis M, de Gouveia RH, Martins AP, Marques AM.
   A rare histiocytosis with severe cardiac involvement: Erdheim-Chester disease
   Rev Port Cardiol. 2008 May;27(5):727-40

New entries weree made to the “Abstracts of Published Papers” as listed under the “Technical Papers” selection for recently published papers. The additions are as follows:

1. A letter to the editor published in the journal, International Journal of Cardiology.  The article is entitled, “Cardiovascular involvement in Erdheim-Chester disease” and does not include an abstract.
2. An article published in the journal, Case Reports in Dermatology.  The article is entitled, “Peculiar distribution of tumorous xanthomas in an adult case of erdheim-chester disease complicated by atopic dermatitis” and includes an abstract.
3. An article published in the journal, Journal of Thoracic Imaging.  The article is entitled, “Erdheim-Chester Disease With Interatrial Septum Involvement” and includes an abstract.
4. An article published in the journal, BMC Gastroenterology.  The article is entitled, “Unusual Manifestation of Erdheim-Chester Disease” and includes an abstract.
5. An article published in the journal, Clinical Neuclear Medicine.  The article is entitled, “Erdheim-chester disease: imaging-guided therapeutic approach” and includes an abstract.

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

Spelling edits were made to the “Update Information for June 30, 2011” page.

Formatting edits were made to the “Links” page.

Formatting edits were made to the “Grants” page.

A caregiver blog link was removed from the “Blogs and eGroups” page and the “Caregiver Info” page as the blog has been deleted from the internet by its author.