Events

Events Search and Views Navigation

Event Views Navigation

Today

  • 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.

  • Topic: Living with ECD and Pain: Communicating, Coping, and Finding Support

    Speaker: Nicole Hemmenway Chief Executive Officer U.S. Pain Foundation Date: April 7, 2026 Time: 1:00 PM CST Nicole Hemmenway is the Chief Executive Officer of the U.S. Pain Foundation, a patient-led nonprofit working to support the more than 60 million Americans living with chronic pain. A passionate advocate and nonprofit leader, Nicole brings both professional expertise […]

  • 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 practitioner and clinical investigator at the National Human Genome Research Institute (NHGRI) of the National Institutes of Health in Bethesda, Maryland. He earned his Bachelor […]

  • French Community Chat

    Date: July 11, 2025

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

  • Italian Community Chat

    Date: Apr 15, 2025

    Time: 12:00 pm

  • Caregiver 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.

  • 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.

  • Spanish 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.

  • Australian/New Zealand 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.

  • 11th Annual ECD Patient & Family Gathering – Birmingham 2026

    Hilton Birmingham at UAB 808 20th St S, Birmingham, AL 35205, Birmingham, AL, United States

    The Erdheim-Chester Disease Global Alliance and UAB School of Medicine are hosting a Patient & Family Gathering designed to support patients, families, clinicians, and researchers. The event will feature educational discussions, community connection, and updates on treatment progress and patient care resources.

  • 11th Annual ECD Medical Symposium – Birmingham 2026

    Hilton Birmingham at UAB 808 20th St S, Birmingham, AL 35205, Birmingham, United States

    The Erdheim-Chester Disease Global Alliance and UAB School of Medicine are hosting a Medical Symposium bringing together leading experts and the global ECD community to share research advances, clinical insights, and resources. Attendees can expect educational sessions, networking, and updates on emerging treatments.

  • Caregiver 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.