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4th International ECD Patient & Family Gathering

A total of 63 patients and family members, and numerous physicians, from 17 different countries attended the 2016 Patient & Family Gathering. Attendees learned about current ECD studies and trials, how ECD can affect various organs of the body, pain management, scans, and care management. Please see the event materials below for more on this successful event.

4th Annual ECD Medical Symposium

Location: Paris, France Summary of Presentations Presentations The following presentations were given at the 2016 meeting. Visit the ECD Global Alliance YouTube channel for all published ECD related videos.

5th Annual ECD Medical Symposium

Location: New York, NY Presentations The following presentations have been added in hopes that it will help other physicians and researchers that are interested in learning more about ECD. The ECDGA is grateful for the efforts and contributions made by the medical community to improve care for ECD patients. Photos - Reception Photos - Medical […]

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 ECD Medical Symposium

Location: Orlando, FL " has helped me and my patients by] bringing experts together to make collaborative progress." -  Ronald S. Go, MD, 2018 Attendee Presentations Coming soon! Receptions Photos Medical Meeting Photos