2016 ECD Patient & Family Gathering  

Event Schedule:

Medical Professional & Member Welcome Dinner
Thursday September 15, 2016
7:00 - 8:30 pm

Patient & Family Gathering
Friday, September 16, 2016
9:00 am - 5:30 pm 

Patient Social
Friday, September 16, 2016
6:00 - 7:00 pm 

Caregiver Social
Friday, September 16, 2016
6:00 - 7:00 pm 

Event Location:

Paris Marriott Rive Gauche Hotel & Conference Center
17 Boulevard Saint-Jacques, 75014
Paris, France

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


Travel Information:

Join Us:

Dear ECD Global Alliance Members,

You are invited to attend the International ECD Patient and Family Gathering scheduled for September 16, 2016 in Paris, France. 

We are looking forward to your attendance. Please join us for a welcome dinner reception on the evening of September 15, 2016, invited guests are medical professionals, patients and their families.

The Patient & Family Gathering, scheduled to begin September 16, will provide opportunities to interact with the ECD medical research community and others in the health field.  Additionally, we will have a social for attendees on the evening of September 16. 

The event will be held at the Paris Marriott Rive Gauche Hotel & Conference Center. Sleeping rooms have been blocked for event attendees at a rate of 250 EUR for a single guest/night and 265 EUR for two guest/night.  All rooms are assigned one bed unless otherwise noted in your reservation. To find out current conversion rates from Euro 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: https://resweb.passkey.com/Resweb.do? mode=welcome_ei_new&eventID=14494877.  If you require a wheelchair accessible room, these are limited accommodations 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 and their date of expiration. By registering early you will help the organization ensure that adequate space and food are available.  These fees will apply to each guest.

  • $100.00 from January to April 30
  • $200.00 from May 1 to June 30
  • $300.00 from July 1 to September 16

Please note, effort is being made to provide limited interpreter services during the Patient & Family Gathering, as funding allows.  Anyone requiring such services is asked to register no later than June 15, 2016, to best allow for arrangements to be made. 

Financial assistance to help with travel and lodging expenses for attending this event are no longer available.  However, if you have not registered and need assistance with the registration fee, please email Jessica at jessica.corkran@erdheim-chester.org for assistance.  Thank you to all of our donors that have made financial aid possible.

THANK YOU for all you do to support the ECD Global Alliance.  We are looking forward to seeing you in Paris!

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   

Around the World               


    To learn more about the

    ECD Global Alliance, please go to


If you have any questions, please contact one of the following team members:

  Jessica Corkran                                                             Elizabeth Anderson                       
  Communications Director                                         External Affairs Coordinator
  1-337-526-3948                                                          1-337-404-6033 
  Jessica.Corkran@erdheim-chester.org                 Liz.Anderson@erdheim-chester.org