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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

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 Annual ECD Medical Symposium

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

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.

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 […]