ECD Global Alliance

Patient and Family Gathering

and

Financial Assistance Information

Overview 

The 2013 Erdheim-Chester Disease Global Alliance Patient and Family Gathering will be held November 1 and 2, 2013, at the Marriott Marquis and Marina in San Diego, California, immediately following an ECD Medical Symposium.

The Erdheim-Chester Disease Patient and Family Gathering will provide an opportunity for ECD Global Alliance Members and their families to learn about the most current treatments, research and patient studies from experts in the medical community.  In addition, patients and families will have an opportunity to fellowship with one another while receiving information about current ECD Global Alliance initiatives and other related topics of interest to patients and caregivers.  

A small registration fee of $40.00 will be used to assist with the costs associated with the event.

The closest airport to the Marriott Marquis and Marina is the San Diego International Airport (www.san.org/).

Financial Assistance

If you do not require financial assistance, please register at this link:  http://events.constantcontact.com/register/event?llr=vxnuk4lab&oeidk=a07e73ss7vic308c2f1

Limited financial assistance is available for ECD Global Alliance registered patients on a "first-come, first-served" basis. This assistance is for those who would not otherwise be able to attend the Patient and Family Gathering due to financial burdens.  Please see below for financial assistance limitations and reimbursement:

With pre-approval, airfare will be reimbursed up to a total of $1000, for a registered patient and one caregiver/travel companion.  An ECD Global Alliance representative will provide reimbursement at the Patient and Family Gathering to pre-approved ECD patients who provide an original receipt of airfare costs.

Registered ECD patients will receive one double room at no cost to them on the evening of October 31, November 1 and November 2, 2013.  However, the patient or patient representative will still be required to register and reserve a room(s) at the link provided on the confirmation email.

Note:  Cost for lodging will be incurred by the ECD registered patient should their stay extend past November 2, 2013 or additional lodging is required beyond the one (1) double room provided by the ECD Global Alliance. 

The following meals will be provided for each attendee at no charge:

• November 1, 2013:  Continental breakfast, lunch and dinner
• November 2, 2013:  Continental breakfast   

Please see the tentative agenda for the Patient and Family Gathering below.  Topics to be presented are subject to change based on the feedback gathered from the registration process.

 

Tentative Agenda - Subject to Change

 

  October 31, 2013: Patients and Families Arrive at the Marriott Marquis & Marina

•  Check-in is at 4 p.m. on October 31, 2013 
• Check-out is at Noon on November 2, 2013

November 1, 2013 Track One  7:30am – 8:30am: Breakfast & Fellowship  8:30am – 9:00am: Welcome and overview  9:00am - 11:00am: State of ECD Medical Research; Clinical Studies Overview; Current ECD Treatments  11:00am – Noon: Topics of Interest   Noon - 1:00pm: Lunch  1:00pm - 4:30pm: Topics of Interest   4:30pm – 5:00pm: Closing   6:00pm: Dinner	November 1, 2013 Track Two*  9:00am – Noon: Fellowship  Noon - 1:00pm: Lunch  1:00pm - 4:30pm: Fellowship  6:00pm:  Dinner  *Track Two will be a room set aside for patients to fellowship with one another and allow for a rest space between sessions in Track One.
November 2, 3013  7:30am – 8:30am: Breakfast & Fellowship  8:30am – 4:30pm: Open Fellowship or San Diego Tour Opportunity