Annual International ECD Patient & Family Gathering

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.

B&W Family

5th Annual International ECD Patient & Family Gathering
New York, NY
October 27, 2017

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Medical professionals interested in learning more about ECD and connecting with other researchers and physicians are invited to attend the ECD Medical Symposium on October 26, 2017.  Use this event announcement to inform medical professionals about the event and share with treating institutions.

What did attendees say about the 2016 event?

“[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


4th International ECD Patient & Family Gathering
September 16, 2016 | 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 body, pain management, scans, and care management.  Please see the event materials below for more on this successful event.

2016 Event Materials

2015 Event Materials

See also the ECD Medical Symposium.

Contact Us

  • ECD Global Alliance, P.O. Box 775,
    DeRidder, LA 70634 USA

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