Update Information for November 20, 2013 (V 2.43)

The “Main” page was modified to:

• Remind medical professionals to put the 2014 ECD Medical Symposium on their calendars for September 18, 2014.  This event will be held at the National Institutes of Health (NIH) in Bethesda, Maryland, USA, just outside of Washington, DC.  A pamphlet from the 2013 ECD Medical Symposium was also made available.
• Remind patients, and their families and friends, to put the ECD Patient and Family Gathering on their calendars for September 19-20, 2014.  This event will be held in Bethesda, Maryland, USA, just outside of Washington, DC.  A pamphlet from the 2013 ECD Patient and Family Gathering was also made available.
• To provide links to 3 new Erdheim-Chester Disease videos that were recently produced by the ECD Global Alliance.  These videos have been produced to help educate people and raise awareness about ECD.
  • 20 minute ECD film
  • 2 minute ECD film
  • 30 second ECD awareness film

A new entry was made on the “Blogs and eGroups” page to include a blog written by Brad Crump.

The “Grants” page was modified to include a link to the Memorial Sloan-Kettering Cancer Center’s announcement about the 2013 $50,000 ECD research grant that was awarded to Omar Abdel-Wahab, MD, David Hyman, MD, and Eli Diamond, MD.  The study is 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.

A new physician, familiar with ECD, was added to the “Physicians” page.  His information is as follows:

Babar Kahlon, MD, PhD
Senior Consultant, Neurosurgery
Skane University Hospital
Sibbarpsv. 44
Limhamn, Skane  21611
Lund, SWEDEN
Telephone:  +46 70 531 47 57
e-mail:  babar.kahlon@med.lu.se

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

The “ECD Global Alliance” page was updated to show an updated timeline showing the major accomplishments of the organization since before it was formed.

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

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:

Tsu JH, Yuen SK, Cheung H, Lee YW, Liu PL.
Erdheim Chester disease:  an uncommon cause of upper urinary tract obstruction
Hong Kong Med J. 2013 Oct;19(5):451-4

Rivera TL, Irish RD, Hoda SA, Steiner GC, Rackoff PJ, Fischer HD
Erdheim-Chester disease–clinical pathological case discussion
Bull Hosp Jt Dis (2013). 2013;71(2):152-5

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 Bulletin of the Hospital for Joint Diseases.  The article is entitled, “Erdheim-Chester disease–clinical pathological case discussion” and does not include an abstract, but can be found online.
2. An article published in Int J Hematol.  The article is entitled, “Erdheim-Chester disease and Schnitzler syndrome: so near, and yet so far” and does not include an abstract.
3. An article published in Adv Immunol.  The article is entitled, “Pathological consequence of misguided dendritic cell differentiation in histiocytic diseases” and includes an abstract.
4. An article published in Hong Kong Med J.  The article is entitled, “Erdheim-Chester disease: an uncommon cause of upper urinary tract obstruction” and includes an abstract.
5. An article published in J Clin Ultrasound.  The article is entitled, “Virtual CT sonographically guided biopsy of a retroperitoneal mass in a patient with Erdheim-Chester disease” and includes an abstract.