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  • 5th Annual International ECD Patient & Family Gathering

    Thank you to the 150 participants for making this year’s ECD Patient Gathering a huge success! Patients, family members, nurses, research teams and numerous physicians attended the 2017 Patient & Family Gathering held in New York. Attendees were brought up-to-date on the latest research, treatments, and care management techniques, including the psychological affects of living with ECD. Please see the event materials below for more information.

  • 6th Annual International ECD Patient & Family Gathering

    A total of 109 patients, family members, and physicians, from eight countries attended the 2018 Patient & Family Gathering.
    Attendees learned about the drug trial process, how to manage multiple medications, how to care for yourself with nutrition and exercise, and more about care management. Please see the event materials below for more on this successful event. Thank you to all participants!

  • 7th International ECD Patient & Family Gathering

    All patients and loved ones interested in learning more about ECD and meeting other families are encouraged to attend the following events. The registration fee for the 2-day event includes access to all conference sessions, reception dining, as well as lunch and light refreshments during conference break times. The following meeting times are subject to change.

  • Using ECD Consensus Recommendations: Advocating for your health

    An educational webinar was held to explain the newest Erdheim-Chester Disease (ECD) consensus document and learn how to use it for care and payer support. 

  • 8th Annual ECD Medical Symposium

    2021 Annual International ECD Medical Symposium Virtual Symposium Thank you for participating in this year’s virtual symposium! Provided below is a listing for this meeting, including the agenda, a printable program, speaker bios, abstracts, and presentation slides. Following the meeting, a recording will be added here and emailed to attendees. 2021 Virtual Event Agenda Medical […]

  • Histio Patient Needs: A Focus on the Eyes and Vision

    In this webinar, the doctors at Memorial Sloan Kettering Cancer Center (MSK) help further your understanding of how current eye involvement may affect daily life and how to obtain better outcomes and results.

  • Endocrine Conditions in Erdheim-Chester Disease

    This webinar, co-hosted by the Histiocytosis Association and Erdheim-Chester Disease Global Alliance focused on ECD and covers endocrine conditions and their management across all histiocytic disorders.