2014 ECD Global Alliance

ECD Event in Bethesda, Maryland


Wine Social

Wednesday September 17, 2014 at 6:00-8:00pm

(Medical Symposium Attendees & ECD-GA Board of Directors)
No federal funds will be used for this event.


ECD Medical Symposium

Thursday September 18, 2014
(Hosted by the NIH)


Patient and Family Gathering Event

Friday September 19, 2014 thru Saturday September 20, 2014


 Double Tree by Hilton Hotel     Bethesda - Washington DC

8120 Wisconsin Avenue 
Bethesda, MD    20814    


To reserve your room by phone, please call 1-800-955-7359 and ask for the ECD Global Alliance group rate or use code EC9.

To reserve your room online, please go to www.doubletreebethesda.com Please enter EC9 in the Special Accounts section to receive the ECD-GA group rate.

If you have any questions, please contact:

Christina Baker 
ECD-GA Staff 


Kathy Brewer
ECD-GA Board of Directors

  "Supporting Those Affected by Erdheim-Chester Disease"

To learn more about the

ECD Global Alliance, please go to


Hello ECD Medical Community!

The NIH will be hosting the 2nd Annual International ECD Medical Symposium on the NIH campus in Bethesda, Maryland, on September 18, 2014.  More information will be coming to you from the NIH about this event and how to register. 

The ECD Global Alliance invites you to join us for a Wine Social on the evening preceding the Symposium.  We also hope you will be interested in participating in the 2nd Annual International Patient and Family Gathering to be held on the days following the Symposium. 


The ECD-GA will be hosting a Wine Social on September 17, from 6:00 - 8:00 pm, the evening prior to the ECD Medical Symposium.  The Wine Social will be an opportunity for fellowship among the Medical Symposium attendees and the ECD-GA Board of Directors.  We hope you will register to attend.


The ECD Medical Symposium, scheduled for September 18, 2014, will be hosted by the NIH with a separate registration process.  For more information, please contact Juvianee Estrada-Veras, MD:


The ECD-GA Patient and Family Gathering, scheduled for September 19 and 20, 2014, will be an opportunity for patients to hear from medical professionals about treatments, trials and research.  We would be honored if you could attend and share your knowledge with patients and family members.

As part of the Event, we are hoping that members of the medical community will participate in one or more of the following panels:

  • ECD treatment options
  • ECD studies/research discussions
  • General question and answer session

Additionally, we are planning break-out sessions concerning several topics of interest for patients and their families.  (More information concerning proposed session topics can be found below in the draft 2014 Patient and Family Gathering Agenda.)

The registration fee will be waived for the Wine Social and the Patient and Family Gathering for those who are attending the ECD Medical Symposium hosted by the NIH.  However, we do ask that you register as soon as possible to allow the ECD-GA to plan appropriately and thus allow unrestricted attendance. 

The ECD-GA has contracted with the Double Tree Hotel in Bethesda to secure meeting rooms and lodging.  Please consider staying at the Double Tree using the information listed on the left to reserve your room.  Staying at this hotel will be a convenient location for attendees and will help the ECD-GA meet its contractual obligations.   

 As always, thank you for all you do to support the ECD Global Alliance.  We are looking forward to a productive year with your help!

Warmest Regards,

Kathy Brewer

President, ECD-GA Board of Directors


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Your support will help fund this event and other ECD-GA initiatives!