Event Schedule:

Medical Professional & Member Welcome Social
Thursday October 26, 2017
6:00 - 8:30 pm

Patient & Family Gathering
Friday, October 27, 2017
8:00 am - 5:00 pm 

Event Location:

New York Marriott East Side
525 Lexington Avenue at 49th Street
New York, NY, 10017
(212) 755-4000

For reservations at this hotel and to receive the discounted group rate, please follow the hotel reservation website page for our event HERE


New York City Information:

Fees & Deadlines:

  • February to May 31 - $100
  • June 1 to Auguast 31 - $200
  • September 1 to October 27 - $300
  • August 15 - Financial Aid Request Deadline

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Dear ECD Global Alliance Members and Families,

The ECD Global Alliance announces the 5th International ECD Patient and Family Gathering on October 27, 2017 in New York, NY. 

This annual event is an invaluable experience to learn from ECD-knowledgeable physicians from around the world. The patients and their families will also find time for fellowship, allowing them to share stories and experiences with one another. These annual events have proven to be a valuable contribution to the ECD community! To find out more about these events, including presentation recordings and photos from past events, please follow the Events page on our website. We are looking forward to your attendance.


All events will be held at the New York Marriott East Side hotel, see sidebar for more information.

Please also join us for a Welcome Social on the evening of October 26 at 6:00 pm. Invited guests include medical professionals, patients and their families. 

The Patient & Family Gathering is scheduled to begin October 27 from 8:00 am to 5:00 pm.  A draft agenda of the presentations will be available this summer.  If you would like a specific topic to be considered, please let us know in your registration form or email your idea to Jessica at jessica.corkran@erdheim-chester.org.


Sleeping rooms at the New York Marriott East Side hotel have been blocked for event attendees at a rate of $349 per night; this rate is available until October 3, 2017.  To find out current conversion rates from USD to other currencies, please see a currency conversion calculator. 

You are responsible for making your room reservations, please follow this link to reserve your room: http://cwp.marriott.com/nycea/ecdga2017.  If you require a wheelchair accessible room or a room with double beds, these are limited and we recommend booking your room soon to ensure availability.  Staying at this hotel will be the most convenient location for attendees and will help the ECDGA meet its contractual obligations.  


The following is a list of registration rates for the event, which will increase over time, according to the dates listed. By registering early you will incur a lower fee and will help the organization ensure that adequate space and food are available.  Fees apply to each guest.

  • $100.00 from February to May 31
  • $200.00 from June 1 to August 31
  • $300.00 from September 1 to October 27

The fees associated with this event contribute to the many expenses required to host this meeting, such as meeting rooms, audio and visual rentals, printed materials, food and beverage, etc.  Thank  you for understanding and helping with these costs.   


Financial assistance is available on a limited basis to help with travel and lodging expenses associated with attending this event.  Those receiving financial assistance will be requested to volunteer (or arrange a volunteer in their place) on one or more ECDGA projects based on skill sets and time available.   Those not having received financial assistance in previous years will be given priority.  

Requests for financial aid must be submitted by August 15, 2017.  Exceptions to this deadline will be granted to newly diagnosed patients. Please email Jessica at jessica.corkran@erdheim-chester.org with questions. THANK YOU to the donors that have made financial aid possible for this event.

Thank you for all you do to support the ECD Global Alliance!  We are looking forward to seeing you in New York!

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!


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


Supporting Those Affected by Erdheim-Chester Disease  To learn more about the ECDGA, please visit


If you have any questions, please contact the following team member.

  Jessica Corkran                                                                                 
  Communications Director