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 […]
7 events found.
Events
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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.
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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 […]
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Italian Community Chat
Date: Apr 15, 2025
Time: 12:00 pm -
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12th Annual ECD Patient & Family Gathering – Glasgow, Scotland 2027
We are excited to announce that the 12th Annual ECDGA Patient and Family Gathering will be held in Glasgow, Scotland in August 2027. This special event will bring together patients, […]
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12th Annual ECD Medical Symposium – Glasgow, Scotland 2027
We are excited to announce that the 12th Annual ECDGA Medical Symposium will be held in Glasgow, Scotland in August 2027. This special event will bring together researchers and clinicians from […]