Update Information for December 18, 2013 (V 2.44)

The “Main” page was modified to include the following:

Summary of the 2013 ECD Medical Symposium

Summary of the 2013 ECD Patient and Family Gathering

The “What is ECD?” page was modified to include more up-to-date information about ECD treatments and to provide information about how ECD is typically monitored.

The “Resources” page was updated to

1. Include an article, written by an ECD patient volunteer, entitled, “I Have What?“.  This article is intended to help newly diagnosed ECD patients.
2. Provide an updated list of “Definitions and Acronyms” used in the medical field.  Thanks to our member who submitted this list.

The “Caregiver Info” page was updated to fix some broken links.

The Patient-to-Patient” page was updated with an interview entitled, “Wife fighting to save others from rare disease after husband’s death“, that includes an interview with two members of the ECD Global Alliance, Charles and Kathy.

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

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:

1. Roei David Mazor,  Mirra Manevich-Mazor, &  Yehuda Shoenfeld
   Strategies and treatment alternatives in the management of Erdheim–Chester disease
   Informa Healthcare . 2013Nov; 10.1517/21678707

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 Informa Healthcare.  The article is entitled, “Strategies and treatment alternatives in the management of Erdheim–Chester disease”, includes an abstract and can be found online.
2. An article published in Scand J Infect Dis.  The article is entitled, “Erdheim-Chester disease: A rare cause of recurrent fever of unknown origin mimicking lymphoma” and includes an abstract.

The “Grants” page was modified to state that the ECD Global Alliance will be awarding two grants in 2014, not to exceed a total of $100,000USD.  This years grant process will begin with a call for Letters of Intent.  If you are interested in submitting a proposal for the 2014 grant, please emaill support@erdheim-chester.org.  A notification of the schedule for the 2014 grant will be emailed to all those who have expressed an interest.