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8th Annual International
Erdheim-Chester Disease
Patient & Family Gathering
In collaboration with Mayo Clinic | Rochester, Minnesota
Part of the ECD Global Alliance (ECDGA) 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 patients and family members, as well as increase their knowledge and understanding of Erdheim-Chester Disease (ECD).
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.
Co-Hosts
Your hosts work closely with the ECDGA staff to ensure the event experience is educational, valuable, and inspiring.
Dr. Gaurav Goyal
Assistant Professor, Hematology-Oncology
University of Alabama, Birmingham, AL, USA
Event Location
Mayo Clinic
200 1st St SW
Rochester, MN 55905
PATIENT & FAMILY EVENTS
Patients, loved ones, and medical professionals are welcome to the following events.
Meet & Greet
Thursday, April 27 | 3:00 to 5:00 pm
Patients and family members will be given an opportunity to socialize with one another before the reception.
Welcome Reception
Thursday, April 27 | 6:00 to 8:00 pm
All event attendees are encouraged to attend this event to meet and enjoy fellowship with patients and medical professionals. Hors d’oeuvres will be served.
Family & Patient Meeting Day
Friday, April 28 | 9:00 am to 5:00 pm
Medical speakers knowledgeable in current ECD treatments and care will present helpful information to families and other treating physicians.
Registration Costs
Registration fees help to cover some of the costs of the event related to meeting room space, food, and beverages, audio/video services, printing, etc. Thank you for understanding and for your support of the organization. If this prevents you from being able to attend, please let us know.
Please note the changes in registration rates as the event approaches. By registering early you will incur a lower fee and will help the organization ensure that adequate space and food are available.
Early Registration for Meeting Day
$50/person
Through March 7, 2023
Late Registration for Meeting Day
$100/person
March 8 to April 28, 2023
Welcome Reception
$50/person
In collaboration with Mayo Clinic
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ECD GLOBAL ALLIANCE
Patient & Family Gathering
Learn + Connect
ECD GLOBAL ALLIANCE
Patient & Family Gathering
Learn + Connect
THANK YOU
We look forward to seeing you at the events! Registration confirmation is on its way to your inbox now. Event updates will be emailed to all members and posted on our media pages and website. Feel free to reach out in the meantime if you have any questions or concerns.
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Love these meeting connections? Help us continue hosting these annual events into the future by donating.