Part of the ECD Global Alliance’s mission is to educate and support patients with the information they need to advocate for their health and quality of life.  The purpose of a Patient and Family Gathering (PFG) is to unite patients and family members, as well as increase their knowledge and understanding of Erdheim-Chester disease.

The PFG provides attendees with a place to meet and an opportunity to direct questions and concerns to an international group of medical professionals who have experience in caring for ECD patients and who are doing research in the field.  The information that is shared can help lead a patient to quickly learn more about ECD and possible treatment options, as well as hear about the latest research findings.

 

ANNUAL INTERNATIONAL PATIENT & FAMILY GATHERING

April 13-14, 2024 |  Seattle, WA 

 

Register 

 

Overview

The ECD Global Alliance, 2024 Patient & Family Gathering will take place at the Renaissance Seattle Hotel, April 13-14.  This meeting will bring together patients, family members, carers, clinicians, researchers, and members of support organizations to share knowledge and experiences related to ECD diagnosis, treatment, daily living.  There will be time for learning, time for sharing, and time for connecting with others who have
been affected by ECD.  We hope it will be a time for all to
become better informed and find increased hope for the future.

Schedule of Events

Saturday, April 13, 2024.

3 – 5 pm PT                 Meet & Greet
Join patients and families and enjoy getting to know others in the ECD community. 

Sunday, April 14, 2024.

8 – 8:45 am PT            Registration & Continental Breakfast
Enjoy a light breakfast with others and prepare for an informational and hopeful day

8:45 am – 5 pm PT      Patient & Family Gathering
Spend the day learning more about ECD from medical professionals, patients, and others.

6 – 8 pm PT                 Celebration Evening
Spend time with patients, family members, friends, and medical professionals in an evening of hope and celebration.

Who attends?

The event is open to the entire ECD community of patients, carers, and ECD medical professionals.  Please feel free to invite your family, friends, and members of your medical team.

Host

Dr. Paul Hendrie, MD, PhD is this year’s host of the ECD Meeting.  Dr. Hendrie is a member of the Board of Directors for the Erdheim-Chester Disease Global Alliance. He is a hematologist and clinical professor in the Division of Hematology and Oncology at the University of Washington School of Medicine and is an Associate Medical Director at the Fred Hutchinson Cancer Center.  His clinical and research interests are primarily in myeloid neoplasms including histiocyte neoplasms, like Erdheim-Chester disease, systemic mastocytosis and acute myeloid leukemia.  His administrative responsibilities include the inpatient oncology service at UWMC.  Dr. Hendrie has been a part of the ECD Global Alliance community since 2016. We are thankful for Dr. Hendrie’s leadership in addition to the many ECD volunteers, scientific researchers, medical professionals, and patients and families for working to make the 2024 ECD Global Summit one to remember. 

Agenda

The detailed agenda will be coming soon, please check back periodically.

Hotel

A room block has been set up for the Patient & Family Gathering at – 

The Renaissance Seattle Hotel
515 Madison Street
Seattle, WA 98104 USA

Please make your reservations using the link below before the hotel deadline of March 22, 2024.

Group Room Rate: $189 per night
Hotel reservation deadline:  March 22, 2024
Click Here to Reserve a Room

Travel

Seattle is served by the Seattle-Tacoma International Airport which is about 15 miles from the Renaissance Seattle Hotel.  Transportation options between the airport and the hotel include:

• ST Link Light Rail, 55 minutes, $3 USD, requires walking blocks to the light rail station and to the hotel.
• Airport Shuttle, 55 minutes, approximately $18 USD, reservation required
• Ride Share (lyft or Uber), 30 min, fares vary
• Taxi, 30 min, $40 USD

Scholarship Help

We have a limited number of scholarships available if a patient/family member would be unable to attend due to financial reasons.  If a scholarship is needed, please contact the ECDGA at support@Erdheim-Chester.org as early as possible.

Awareness Nomination Opportunity

You are encouraged to submit a Mark Heaney Award nomination to honor the person you believe has performed outstanding, effective ECD/adult histiocytic awareness activities over the past year. The intent is for awareness activities to be focused on efforts that will educate those physicians or others who can help diagnose ECD early in its progression. The award is open to all – patients, caregivers, medical professionals, investigators, friends – of any nationality or residence.  The deadline for nominations is February 29, 2024. Your nomination is accepted here – https://questionpro.com/t/ATlviZ00Lv. The award recipient will be announced at the ECD meeting on April 14. Hope to see you there!

 

Attendee Experiences

“We are all in the same boat, and our journey will be better together.” – Susan Anderson, ECD Family

“I have been in health care for over 20 years and have never seen or experienced such a caring and devoted group of health care professionals and volunteers!” – ECD Patient in Attendance

“I know they can’t give me a cure, or even answer all of my questions, but just knowing they are here for me, and they are listening, and they understand what I’m going through, that’s what I needed.” – ECD Patient in Attendance