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!
Location: Milan, Italy "ECDGA provides important resources for my patients that has led to faster diagnosis. It also provides a community for patients with a rare disease to feel less alone." - Mark Heaney, MD, 2019 Attendee Presentations Reception Photos
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.
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 […]
Date: March 7, 2025
Time: 03:00 pm
Date: Apr 15, 2025
Time: 12:00 pm
Date: Apr 16, 2025
Time: 08:00 pm
Date: 19 April, 2025
Time: 01:30 pm to 02:30 pm
Date: Apr 23, 2025
Time: 12:00 pm
Date: Apr 26, 2025
Time: 11:00 AM
Date: Apr 29, 2025
Time: 02:00 pm
Date: May 5, 2025
Time: 12:00 pm
