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Erdheim-Chester Disease Global Alliance

Chat Room

 The ECD Global Alliance hosts scheduled online chats each week.  Anyone interested in ECD is welcome to attend.  This includes patients, caregivers/carers, family member, medical personnel, researchers, etc.  Click here to enter the chat room area. 

For those who register with the ECD Global Alliance, emails are sent out announcing each chat session and a summary email is sent following each chat session.  The time for the next chat session is also always posted in the chat room.  If you have not yet registered with the group, you can always enter the chat room to find the time of the next scheduled chat session. 

The chats are open for any discussion topic within reason.  Often discussed topics include, ECD diagnosis issues, treatments, tests, knowledgeable doctors, symptoms, treatment side effects and sometimes just friendly discussion about pleasant things happening in participants' lives.  Most who attend the sessions have found it a good way to meet others whom they can correspond with outside of the chat sessions.  For some this has proved to be a good way to build a support structure of others who are interested in learning as much as they can about ECD and providing mutual support to each other. 

Summaries of each chat session are compiled and are listed below as they become available.

2010

June 26, 2010 April 24, 2010 February 20, 2010
June 19, 2010 April 17, 2010 February 13, 2010
June 12, 2010 April 10, 2010 JFebruary 06, 2010
June 05, 2010 April 3, 2010 anuary 30, 2010
May 29, 2010 March 27, 2010 January 23, 2010
May 22, 2010 March 20, 2010 January 16, 2010
May 15, 2010 March 13, 2010 January 9, 2010
May 8, 2010 March 06, 2010 January 2, 2010
May 01, 2010 February 27, 2010  

 

 

2009

December 26, 2009 August 15, 2009 April 25, 2009
December 19, 2009 August 08, 2009 April 18, 2009
December 12, 2009 August 01, 2009 April 11, 2009
December 05, 2009 July 25, 2009 April 4, 2009
November 21, 2009 July 18, 2009 March 21, 2009
November 14, 2009 July 11, 2009 March 14, 2009
November 07, 2009 July 04, 2009 March 7, 2009
October 31, 2009 June 27, 2009 February 28, 2009
October 10, 2009 June 20, 2009 February 21, 2009
October 3, 2009 June 13, 2009 February 15, 2009
September 26, 2009 June 6, 2009 February 1, 2009
September 19, 2009 May 30, 2009 January 25, 2009
September 12, 2009 May 23, 2009 January 18, 2009
September 5, 2009 May 16, 2009 January 10, 2009
August 29, 2009 May 9, 2009  
August 22, 2009 May 2, 2009

 

 

2008

 

December 27, 2008  October 11, 2008 June 6, 2008
December 20, 2008 September 27, 2008 May 28, 2008
December 13, 2008 September 21, 2008 May 24, 2008
December 6, 2008 August 15, 2008 May 17, 2008
November 30, 2008 August 8, 2008 May 10, 2008
November 22, 2008 July 18, 2008 April 30, 2008
November 15, 2008 June 27, 2008 April 24, 2008
October 26, 2008 June 20, 2008 April 10, 2008
October 15, 2008 June 13, 2008 April 4, 2008

 

Last updated: July 11, 2010