Annual Patient & Family Gathering History

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 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 PFG provides attendees with a place to meet and an opportunity to direct questions and concerns to an international group of medical professionals who have experience in caring for ECD patients and who are doing research in the field.  The information that is shared can help lead a patient to quickly learn more about ECD and possible treatment options, as well as hear about the latest research findings.

Looking back at previous years’ videos and presentations will help you learn more about this event. Please find these listed below for your convenience and feel free to reach out with any questions.  (All ECDGA videos can also be found on our YouTube Channel.)

2023 International ECD Patient & Family Gathering

April 28, 2023| Rochester, MN

6th Annual International ECD Patient & Family Gathering
November 16, 2018 | 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 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!


5th Annual International ECD Patient & Family Gathering
October 27, 2017 | 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 were brought up-to-date on the latest research, treatments, and care management techniques, including the psychological effects of living with ECD.  Please see the event materials below for more information.




4th Annual PFG, Paris, France4th 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

Last updated: June 27, 2023

Contact Us

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

Featured Partners

Copyright 2024. All rights Reserved ECD GLOBAL ALLIANCE. A 501(c)(3) organization. EIN# 27-0759192. | Privacy Policy