Part of the ECD Global Alliance mission is to educate and support patients with the information they need to advocate for their health and quality of life. The purpose of the Patient and Family Gathering (PFG) is to unite international patients and family members as well as increase their knowledge and understanding of Erdheim-Chester Disease.
|“[The ECDGA] from the start has been a great help.”
– ECD Patient
|“I think the Gathering in France has been a success. New patients have been able to attend and get to know more about the ECDGA.” – ECD Caregiver||“Every year I learn something new that I take to my patient.” – ECD Care Center Lead Physician||“[The ECDGA helps by] providing a meeting with international specialists.” – Physician|
A total of 63 patients and family members, and numerous physicians, from 17 different countries attended the Patient & Family Gathering this year. Attendees learned about current ECD studies and trials, how ECD can affect the various organs of the body, pain management, scans, and care management. Please see the event materials below for more on this successful event.
See also the ECD Medical Symposium.