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 is to unite international patients and family members, as well as increase their knowledge and understanding of Erdheim-Chester Disease.

B&W Family

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.

Please join the ECDGA and the ECD community of patients, caregivers, and ECD medical professionals for this year’s first event held in Italy.

7th International ECD Patient & Family Gathering
Milan, Italy
July 11 – 12, 2019

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Attendee Experiences

“It was amazing to witness the dedication and commitment that these doctors displayed regarding the diagnosing, treatment, and research efforts as it relates to ECD. I am grateful for this rare opportunity.”

– Leretha R. Thomas, ECD Caregiver

“I have been in health care for over 20 years and have never seen or experienced such a caring and devoted group of health care professionals and volunteers!”

– ECD Patient in Attendance

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 affects 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

See also the ECD Medical Symposium.

Contact Us

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

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