Newsletter 2013-1


Erdheim-Chester Disease Global Alliance

A non-profit patient advocacy group that

"supports those affected by ECD" 



Dear ECD Community,


The following is an update on the activities of the ECD Global Alliance.  We believe you might find something of interest no matter if you are a patient, family member or medical professional.


A big "thank you" goes out to the members who answered the ECD-GA planning survey that was sent a few months ago.  The information gathered from this survey was used to begin planning several new initiatives!


Thank you for your time, support, encouragement and involvement.  Please be sure to visit the ECD-GA website for news and updates at:



Peace and blessings,


Kathy Brewer

President, ECD Global Alliance




Organizational Overview

patient graph 

  • New ECD-GA Board of Directors Member: 

Dr. Juvianee Estrada-Veras, with the National Institutes of Health, has accepted the position of Federal Liaison for the ECD Global Alliance as of February 23, 2013.  Many patients may be familiar with Dr. Estrada-Veras as the lead investigator for the National Institutes of Health's ECD natural history study. 


  • Research Grant Opportunities:  The ECD Global Alliance will be awarding one or more research grants in 2013. For more information, please click on the following link to access the ECD grants page: http://www.erdheim-chester.org/Grants.htmlAll interested investigators are encouraged to submit, regardless of location.

Research Grant Proposals are due by May 15, 2013. 


Communication and Sharing Opportunities


  • Please Log-in and Post on Rare Connect:  The Rare Connect project is a social medical website that was created by NORD & EURODIS for rare disease communities.  The website has been designed to provide patient outreach and education.  Please log in at: http://www.rareconnect.org Participants can request human generated translations between English, French, German, Italian, and Spanish!


  • Online Chat:   Chat sessions are still on-going and are a great way to reach out to fellow ECD-GA members to share experiences and to fellowship.  Chat sessions are open to anyone who has an interest in learning about ECD.  Chat sessions are held each Saturday at 1:00 PM (ET) at the following link:  http://www.chatzy.com/427437211406


Current Patient Studies


  • A comprehensive list of patient studies, which includes the new BRAF V600 Mutation Study, the NIH Natural History Study and the "Spit for a Cure" study can be reviewed by clicking here:  http://www.erdheim-chester.org/ECDStudies.html 




  • The ECD-GA is hosting two events in October/November, 2013, in San Diego, California, at the Marriott Marquis and Marina!  ECD-GA has already sent the email invitations for this event.  If you did not recieve an invitation, please contact Christina Baker at christina.baker@erdheim-chester.org.




·        Medical and Professional Community Event:  Erdheim-Chester Disease International Medical Symposium scheduled for October 31, 2013:

o   This event will be a day long syposium for physicians, scientists, and other medical professionals to come together and share new and emerging information about Erdheim-Chester Disease. 

o   Information will be shared via oral presentations, panel discussions and a poster session.

o   For more information about this event, please email Christina Baker at christina.baker@erdheim-chester.org with your questions and comments.

o   To register for attendance, please click here:


o   To submit an abstract for presentation, please click here:




Abstract submission for oral and poster presentations are due by 

May 30, 2013. 



  • ECD Patient and Family Event:  Erdheim-Chester Disease Patient and Family Gathering scheduled for November 1- 2, 2013:

o   The Patient and Family Gathering will be held from Friday, November 1, 2013 at 7:30 AM  to Saturday, November 2, 2013 at 4:30 PM. 

o   Patients and families will have an opportunity to hear first-hand from leading ECD physicians and researchers about the new and emerging information presented at the ECD International Medical Symposium.  

o   Patients and families will also have an opportunity to learn about topics of interest to ECD patients and also enjoy fellowship with one another.  For more information about this event, please email Christina Baker at christina.baker@erdheim-chester.org with your questions or comments.

o   To register for attendance, please click here: http://events.constantcontact.com/register/event?llr=vxnuk4lab&oeidk=a07e73ss7vic308c2f1

o   To register for attendance and request financial assistance to help with the cost of attendance, please click here: http://events.constantcontact.com/register/event?llr=vxnuk4lab&oeidk=a07e73ss7z31c800413


 Note:  There are limited funds available for financial assistance.   Assistance will be awarded on a first-come, first-served basis. 

 Please register now for attendance! 


Your quick response will aid in the organization's planning for these most exciting events!



 Please use the following link if you would like to donate to the organization:


   Donate to ECD Global Alliance Now!