Update Information for August 27, 2010 (V 2.8)

An update was made to the ECD Case Locations page as found under the “Patient-to-Patient” menu selection.  This update shows the latest information regarding patients registered with the organization.

The Donations page was renamed “How Can I Help?” page.  This page now describes (1) how donation can be made by internet or mail, (2) provides information to those interested in hosting a fundraiser, and (3) lists activities where volunteers can contribute to the organization.

A new blog by the wife of an ECD patient was added to the “Patient-to-Patient | Blogs and eGroups”  and “Caregivers Info” pages.  The blog is entitled, “Live My Life for One Week.”

New links were added to the “Caregivers Info” pages.  They are:

1. Personal growth and self-help website
2. Family Support Center on Disabilities
3. Caregiving: A Universal Occupation –  Caring for Adults with Cognitive and Memory Impairments

New ECD-knowledgeable doctors were added to the “Physicians” page.  The following were added:

1. Two neurosurgeons from England
2. An endocrinologist from England
3. A neurologist from Pakistan
4. A pathologist from the US

Contact information was updated for other listed doctors.

The “Resources” page was re-formatted and some additional awareness items were added.  Items added were an ECD Flyer, and Poster Ideas.

Information about the 2010 Grant being offered by the ECD Global Alliance was updated to show that the deadline for submitting applications has passed.

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

New 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:

Julien Haroche, MD, PhD; Philippe Cluzel, MD, PhD; Dan Toledano, MD; Gilles Montalescot, MD, PhD; Diane Touitou, MD; Philippe A. Grenier, MD; Jean-Charles Piette, MD; Zahir Amoura, MD
Cardiac Involvement in Erdheim-Chester Disease
Circulation. 2009 Jun 30;119(25):e597-8.

Monfredi O, Jones C, Warnock N.
No way in & no way out: a case of renal failure due to both pre- and post-renal obstruction
Nephrol Dial Transplant. 2008 Jul;23(7):2406-8. Epub 2008 Apr 4.

In addition some older articles published in Radiology that had recently been removed when they could no long be found online, have been reinstated as they once again became available at no cost on the internet.

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 2010 in Arthritis Rheumotology.  The article is entitled, “Pulmonary involvement in Erdheim-Chester disease: A single-center experience of 34 patients and review of the literature” and includes an abstract.
2. An article published in 2010 in Presse Med.  The article is entitled, “Erdheim-Chester disease: Radiological findings” and includes an abstract.
3. An article published in 2010 in J Am Acad Dermatol.  The article is entitled, “Combined Erdheim-Chester disease and Langerhans cell histiocytosis of skin are both monoclonal: a rare case with human androgen-receptor gene analysis” and includes an abstract.
4. And update was made to the “Patient-to-Patient” and “Case Log” page.  This page was originally planned for an update the first half of 2010, but has been rescheduled to the second half of 2010.

General formatting and updating of the ECD Global Alliance pages was done.

A spelling correction was made to “Discussion Regarding ECD with Dr. Razelle Kurzrock July 16, 2008” found on the “Technical Papers” Page.