• Canadian Community Chat

    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.

  • Topic: Managing ECD Pain & Fatigue

    Speaker: Kevin O'Brien RN, MS-CRNP, Nurse Practitioner, Clinical Investigator, Genome Research Institute, National Institutes of Health Date: Thursday, June 25, 2026 Time: 1:00 PM CST Kevin O’Brien is a nurse […]

  • Peer-to-Peer Community Chat

    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.

  • French Community Chat

    Date: July 11, 2025

    Time: 8:00 AM CT to 9:00 AM CT

  • German Community Chat

    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 […]

  • Italian Community Chat

    Date: Apr 15, 2025

    Time: 12:00 pm