Online Connection with Your Community

The ECD Global Alliance hosts virtual online chats each month for anyone in the ECD community. This includes patients, caregivers/carers, family members, medical personnel, researchers, etc.

For those who register with the ECD Global Alliance, you will receive an email announcing each chat session relevant to your role.  If you have not yet registered with the group, we recommend you do so here to stay connected and informed.

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 discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other.

Previously, the ECDGA conducted typed, live online chats for the community. Summaries of previous chat sessions were compiled and archived at the bottom of this page.

Please read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar.

NOTE: Check your time zone here: Time Zone Converter.

There will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy.

English-Speaking Groups

The following group chats will be available in 2024: ECD Patients, ECD Caregivers, ECD Grief Group.

Register Here	Register Here
Register Here

 

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International Groups

Canadian Community Chat Register Here:	Chat para los que hablan español   Registrese aquí:
Chat della comunità italiana                    Registrati qui:	Australian and New Zealand Chat Register Here:
Chat francophone Inscrivez-vous ici:	Deutschsprachiger Chat Hier registrieren:

 

2019

January 5, 2019	January 12, 2019	January 19, 2019
January 26, 2019	June 8, 2019	June 15, 2019
June 22, 2019	June 29, 2019

2018

January 20, 2018	January 27, 2018	February 3, 2018
February 10, 2018	February 17 – March 03, 2018	March 10, 2018
March 17, 2018	March 24, 2018	April 7, 2018
April 14, 2018	April 28, 2018	May 5, 2018
May 12, 2018	May 19, 2018	May 26, 2018
June 2, 2018	June 9, 2018	June 23, 2018
June 30, 2018	July 7, 2018	July 14, 2018
July 21, 2018	August 4, 2018	August 11, 2018
August 18, 2018	August 25, 2018	September 1, 2018
October 13, 2019	October 20, 2019

2017

January 7, 2017	January 14, 2017	January 21, 2017
January 28, 2017	February 4, 2017	February 11, 2017
February 18, 2017	February 25, 2017	March 4, 2017
March 11, 2017	March 18, 2017	March 25, 2017
April 1, 2017	April 8, 2017	April 15, 2017
April 22, 2017	April 29, 2017	May 6, 2017
May 13, 2017	May 20, 2017	May 27, 2017
June 3, 2017	June 10, 2017	June 17, 2017
June 24, 2017	July 1, 2017	July 8, 2017
July 15, 2017	July 22, 2017	August 5, 2017
October 7, 2017	October 14, 2017	October 21, 2017
November 11, 2017	November 18, 2017	December 9, 2017

2016

2014

December 27, 2014	August 23, 2014	April 26, 2014
December 20, 2014	August 16, 2014	April 19, 2014
December 13, 2014	August 9, 2014	April 12, 2014
December 6, 2014	August 2, 2014	April 5, 2014
November 29, 2014	July 26, 2014	March 29, 2014
November 22, 2014	July 19, 2014	March 22, 2014
November 15, 2014	July 12, 2014	March 15, 2014
November 8, 2014	July 5, 2014	March 8, 2014
November 1, 2014	June 28, 2014	March 1, 2014
October 25, 2014	June 21, 2014	February 22, 2014
October 18, 2014	June 14, 2014	February 15, 2014
October 11, 2014	June 7, 2014	February 8, 2014
October 4, 2014	May 31, 2014	February 1, 2014
September 27, 2014	May 31, 2014	January 25, 2014
September 20, 2014	May 24, 2014	January 18, 2014
September 13, 2014	May 17, 2014	January 11, 2014
September 6, 2014	May 10, 2014	January 4, 2014
August 30, 2014	May 3, 2014

2013

December 28, 2013	August 24, 2013	April 20, 2013
December 21, 2013	August 17, 2013	April 13, 2013
December 14, 2013	August 10, 2013	April 6, 2013
December 7, 2013	August 3, 2013	March 30, 2013
November 30, 2013	July 27, 2013	March 23, 2013
November 23, 2013	July 20, 2013	March 16, 2013
November 16, 2013	July 13, 2013	March 9, 2013
November 9, 2013	July 6, 2013	March 2, 2013
November 2, 2013	June 29, 2013	February 23, 2013
October 26, 2013	June 22, 2013	February 16, 2013
October 19, 2013	June 15, 2013	February 9, 2013
October 12, 2013	June 8, 2013	February 2, 2013
October 5, 2013	June 1, 2013	January 26, 2013
September 28, 2013	May 25, 2013	January 19, 2013
September 21, 2013	May 18, 2013	January 12, 2013
September 14, 2013	May 11, 2013	January 5, 2013
September 7, 2013	May 4, 2013
August 31, 2013	April 27, 2013

2012

December 29, 2012	September 1, 2012	April 28, 2012
December 22, 2012	August 25, 2012	April 21, 2012
December 15, 2012	August 18, 2012	April 14, 2012
December 8, 2012	August 4, 2012	April 7, 2012
December 1, 2012	July 28, 2012	March 31, 2012
November 24, 2012	July 21, 2012	March 24, 2012
November 17, 2012	July 14, 2012	March 17, 2012
November 10, 2012	July 7, 2012	March 10, 2012
November 3, 2012	June 30, 2012	March 3, 2012
October 27, 2012	June 23, 2012	February 25, 2012
October 20, 2012	June 16, 2012	February 18, 2012
October 13, 2012	June 9, 2012	February 11, 2012
October 6, 2012	June 2, 2012	February 4, 2012
September 29 2012	May 26, 2012	January 28, 2012
September 22, 2012	May 19, 2012	January 21, 2012
September 15, 2012	May 12, 2012	January 14, 2012
September 8, 2012	May 5, 2012	January 7, 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

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