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.

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.

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!

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.