Supporting Those Affected by Erdheim-Chester Disease Around the World

Event Schedule

  • Care Center Meeting
  • Wednesday, July 10, 2019
  • 3:00 - 5:00 p.m.

  • Medical Social
  • Wednesday, July 10, 2019  
  • 6:00 - 8:00 p.m. 

  • Medical Symposium
  • Thursday, July 11, 2019 
  • 9:00 a.m. - 5:00 p.m.

  • Patient Meeting Welcome Social
  • Thursday, July 11, 2019 
  • 6:00 - 8:00 p.m. 

  • Patient & Family Meeting
  • Friday, July 12, 2019 
  • 9:30 a.m. - 4:30 p.m.

Important Dates

  • April 30, 2019 - Symposium abstracts due
  • May 13, 2019 - Notification of abstract approval
  • June 1, 2019 - Care Center questionnaire form due & RSVP for Care Center meeting attendance
  • June 15, 2019 - ECD study and trial updates due


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!

If you have any questions, please contact:

  Jessica Corkran
  Executive Director                                      


2019 Annual International
ECD Global Alliance Medical Symposium

Dear ECD Community,

The Erdheim-Chester Disease Global Alliance (ECDGA) will be co-hosting the 7th International ECD Medical Symposium with Dr. Lorenzo Dagna and IRCCS San Raffaele Scientific Institute Vita-Salute San Raffaele University in Milan, Italy.  The meeting is scheduled for JULY 11, 2019.  

This annual event is an invaluable experience to collaborate with ECD and histiocytoses knowledgeable physicians from around the world. You can register below for the symposium and related events listed.

The ECDGA is accepting abstracts from February 1 to April 30, 2019.  Late abstracts for poster presentations will be considered through May 15, 2019.  The call for abstracts has expanded this year to include the latest advancements related to all histiocytoses, with a concentration on Erdheim-Chester disease.

Care Center Network Meeting | July 10, 3 - 5 pm

ECD Referral and Emerging Care Center physicians are invited to attend an ECD Care Center meeting the day before the Medical Symposium.  The meeting will include discussions about the Care Center network, the ECD Patient Registry, and other topics of interest to be announced closer to the meeting.  This meeting is meant to help the ECD Care Center Network work optimally.  All specialists interested in becoming an ECD Care Center and those who are currently serving at these centers are encouraged to attend this meeting.  

Medical Social | July 10, 6 - 8 pm

The Medical Social is a gathering that offers an opportunity for fellowship and networking among the Medical Symposium attendees and the ECDGA Board of Directors in attendance.  We hope you will register to attend.

Medical Symposium | July 11, 9 am – 5 pm

If you are interested in presenting ECD research findings, ECD treatment experiences, case studies, or other ECD related topics at this event, please email the Abstract Submission Form to Jessica Corkran at The deadline for oral speaker participation and abstract submittal is April 30, 2019.  All submittals after this date will be accepted as poster presentations.

The event fee is $300 per attendee. This fee assists the organization in covering the cost of the reception and symposium meals, meeting spaces, audio/visual needs, and other supplies. You may contact the organization with any concerns about the fee payment.  

Medical Professional & Family Social | July 11, 6 - 8 pm

The Patient and Family Gathering attendee welcome social is a time for medical professionals, patients, and their families to meet and share their experiences with ECD.  The reception is also a way for the ECDGA to say thank you to all the dedicated members and physicians who continue the fight against ECD. We would be pleased and grateful for your attendance.  Beverages and hor d'oeuvres will be served.

Patient & Family Gathering | July 12, 9:30 am - 4:30 pm

The ECD Patient and Family Gathering is an opportunity for patients to learn and interact with medical professionals about treatments, trials, and research.  We would be honored if you could attend; this event is included in your fee.


The ECDGA has NOT contracted a room block for this event.  However, we do recommend a hotel on the meeting's hospital campus, which is in walking distance.  Hotel Rafael will be the most convenient location for attendees and is reasonably priced.  To book your reservation for € 115.00 + € 4.00 tax, email your needs to or call them at +39 02 21765.1.  

Warmest Regards,

ECDGA Staff and Board of Directors

CLICK to donate to the ECD Global AllianceYour support will help fund this event and other ECDGA initiatives!

For a printable version of the invite, CLICK HERE.