Supporting Those Affected by Erdheim-Chester Disease Around the World

Event Schedule

  • Welcome Social
    Thursday, July 11, 2019 
    6:00 - 8:00 p.m. 
  • Patient and Family Meeting
    Friday, July 12, 2019 
    Registration & sign-in begins at 9:00 a.m.
    Meeting times are 9:30 a.m. - 4:30 p.m.


IRCCS San Raffaele Scientific Institute Vita-Salute San Raffaele University
Via Olgettina, 60
I-20132 Milano - Italy


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Your support will help fund this event and other ECDGA initiatives!


2019 Annual International
ECD Global Alliance Patient & Family Gathering

Dear ECD Community,

The 7th International ECD Patient and Family Gathering is scheduled for JULY 12, 2019 in Milan, Italy!  To find out more about these events, including presentation recordings and photos from past events, please follow the Events page on our website.  

Please join us for a Welcome Social on the evening of July 11, 2019 at 1800 (6:00 p.m.).  All event attendees are welcome to attend this social event to encourage connections between the families and medical professionals. Beverages and hor d'oeuvres will be served.

The Patient & Family Gathering is Friday, July 12 from 0930 to 1700 (9:30 a.m. to 4:30 p.m.).  A draft agenda of the presentations will be available soon.  Topics to include ways to manage your care and types of treatments and their side effects.  

We recommend the Hotel Rafael, which is in walking distance to the hospital's meeting location.  To book your reservation for € 115.00 + € 4.00 tax, email your needs to or by phone at +39 02 21765.1. 

There are fees associated with this event; this funding contributes to the many expenses required to host this meeting, such as signage, printed materials, food and beverage, etc.  Thank you for understanding and helping with these costs.  Each guest will be charged the fees listed.

Registration                      Period Dates                          Price
Early Registration             February to April 15                      $100/per person
Regular Registration        April 16 to May 31                 $200/per person
Late Registration             June 1 to July 12                    $300/per person

Financial assistance is available on a limited basis to help with travel and lodging expenses associated with attending this event.  Please email Jessica at with questions. THANK YOU to the donors that have made financial aid possible for this event!

As always, thank you for being a supportive member of ECD Global Alliance.  We are looking forward to seeing you in Milan!

Warmest Regards,
ECDGA Staff and Board of Directors

If you have any questions, please contact:

  Jessica Corkran
  Executive Director                                      


    Learn more about the ECD Global Alliance.