by Asmaa Javed | May 26, 2025 | Patient and Family Gathering
Part of the ECD Global Alliance’s mission is to educate and support patients with the information they need to advocate for their health and quality of life. The purpose of a Patient and Family Gathering (PFG) is to unite patients and family members, as well as...
by Asmaa Javed | Jan 11, 2019 | Patient and Family Gathering
Location: Milan, Italy 2019 Patient & Family Gathering Schedule of Events 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...
by Asmaa Javed | May 16, 2018 | Patient and Family Gathering
Location: Orlando, FL 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...
by Asmaa Javed | Apr 27, 2017 | Patient and Family Gathering
Location: New York, NY 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...
by Asmaa Javed | Mar 16, 2016 | Patient and Family Gathering
Location: Paris, France 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...
