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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