"Supporting Those Affected by Erdheim-Chester Disease"
When:
Friday November 1, 2013 at 7:30 AM PDT
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Saturday November 2, 2013 at 4:30 PM PDT
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For Questions or Concerns, Please Contact:
Kathy Brewer
Erdheim-Chester Disease Global Alliance (Board of Directors)
1-337-515-6987
support@erdheim-chester.org
Or Contact:
Christina Baker
Erdheim-Chester Disease Global Alliance (Staff Member)
1-318-602-5473
christina.baker@erdheim-chester.org
ECD Global Alliance
Patient and Family Gathering 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 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 note that the patient or patient representative will be required to register and reserve a room(s) at the link provided on the registration page.
The closest airport to the Marriott Marquis and Marina is the San Diego International Airport (www.san.org/).
If you require financial assistance to attend, please register here: http://events.constantcontact.com/register/event?llr=vxnuk4lab&oeidk=a07e73ss7z31c800413
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
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Check-in is at 4 p.m. on October 31, 2013
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Check-out is at Noon on November 2, 2013
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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. |
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November 2, 3013 7:30am – 8:30am: Breakfast & Fellowship 8:30am – 4:30pm: Open Fellowship or San Diego Tour Opportunity | |
*For more information about things to do in San Diego, please see the following links:
*Unfortunately, ECD-GA will not be able to fund sight seeing or other personal activities for patients and their families.