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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.
2012
2011
|
December 31, 2011 |
August 27, 2011 |
April 23, 2011 |
|
December 24, 2011 (no summary) |
August 20, 2011 |
April 16, 2011 |
|
December 17, 2011 |
August 13, 2011 |
April 9, 2011 |
|
December 10, 2011 |
August 6, 2011 |
April 2, 2011 |
|
December 3, 2011 |
July 30, 2011 |
March 26, 2011 |
|
November 26, 2011 |
July 23, 2011 |
March 19, 2011 |
|
November 19, 2011 |
July 16, 2011 |
March 12, 2011 |
|
November 12, 2011 |
July 9, 2011 |
March 6, 2011 (no summary) |
|
November 5, 2011 |
July 2, 2011 |
February 26, 2011 |
|
October 29, 2011 |
June 25, 2011 |
February 19, 2011 |
|
October 22, 2011 |
June 18, 2011 |
February 12, 2011 |
|
October 15, 2011 |
June 11, 2011 |
February 5, 2011 |
|
October 8, 2011 |
June 4, 2011 |
January 29, 2011 |
|
October 1, 2011 |
May 28, 2011 |
January 22, 2011 |
|
September 24, 2011 |
May 21, 2011 |
January 15, 2011 |
|
September 17, 2011 |
May 14, 2011 |
January 8, 2011 |
|
September 10, 2011 |
May 7, 2011 |
January 1, 2011 |
|
September 3, 2011 |
April 30, 2011 |
|
2010
|
December 18, 2010 |
August 7, 2010 |
April 17, 2010 |
|
December 11, 2010 |
July 31, 2010 |
April 10, 2010 |
|
December 4, 2010 |
July 24, 2010 |
April 3, 2010 |
|
November 27, 2010 |
July 17, 2010 |
March 27, 2010 |
|
November 13, 2010 |
July 10, 2010 |
March 20, 2010 |
|
November 6, 2010 |
July 3, 2010 |
March 13, 2010 |
|
October 30, 2010 |
June 26, 2010 |
March 06, 2010 |
|
October 23, 2010 |
June 19, 2010 |
February 27, 2010 |
|
October 16, 2010 |
June 12, 2010 |
February 20, 2010 |
|
September 25, 2010 |
June 05, 2010 |
February 13, 2010 |
|
September 18, 2010 |
May 29, 2010 |
February 06, 2010 |
|
September 11, 2010 |
May 22, 2010 |
January 30, 2010 |
|
September 4, 2010 |
May 15, 2010 |
January 23, 2010 |
|
August 28, 2010 |
May 8, 2010 |
January 16, 2010 |
|
August 21, 2010 |
May 01, 2010 |
January 9, 2010 |
|
August 14, 2010 |
April 24, 2010 |
January 2, 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: January 15, 2012