Community Chats
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.
Grief Connection
The loss of a loved one to Erdheim-Chester Disease is an incredibly painful journey, and no one should have to go through it alone. While we no longer schedule Grief Chats in advance, we are here to support you when you need it most. Contact our patient navigator for more information.
English-Speaking Groups
1:00 PM – 2:00 PM CST
November 25, 2025 1:00 PM CST
7:00 PM – 8:00 PM CST
November 18, 2025 7:00 PM CST
International Groups
Canadian Community Chat
11:00 AM – 12:00 PM CST
November 19, 2025 11:00 AM CST
Chat para los que hablan español
11:00 AM – 12:00 PM CST
December 16, 2025 11:00 AM CST
Previously, the ECDGA conducted typed, live online chats for the community. Summaries of previous chat sessions were compiled and archived here.
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.