Erdheim-Chester Disease Global Alliance

Annual International ECD Patient & Family Gathering

Part of the ECD Global Alliance mission is to educate and support patients with the information they need to advocate for their health and quality of life. The purpose of the Patient and Family Gathering is to unite international 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.

Please join the ECDGA and the ECD community of patients, caregivers, and ECD medical professionals for this year’s first event held in Italy.

7th International ECD Patient & Family Gathering
Milan, Italy
July 11 – 12, 2019

2019 Patient & Family Gathering Schedule of Events

All patients and loved ones interested in learning more about ECD and meeting other families are encouraged to attend the following events. The registration fee for the 2-day event includes access to all conference sessions, reception dining, as well as lunch and light refreshments during conference break times. The following meeting times are subject to change.

All events will be held at
IRCCS San Raffaele Scientific Institute
Vita-Salute San Raffaele University
Via Olgettina, 60
I-20132 Milano – Italy

DATE	TIME	EVENT	DESCRIPTION
Thursday July 11, 2019	3 PM TO 5 PM	Group Activity	A group activity may be scheduled for this time frame to allow more social time for families in attendance. This opportunity is still under consideration and will be announced once plans are firm.
Thursday July 11, 2019	6 PM to 8 PM	Welcome Social	All event attendees are welcome to attend this social event to encourage connections between the families and medical professionals. Hor d’oeuvres will be served.
Friday July 12, 2019	9 AM to 5 PM (Registration 8 – 9 a.m.)	Patient & Family Gathering	Medical speakers experienced in ECD treatment will present the latest ECD care information to families and other treating physicians.

Hotel & Lodging

Hotel Rafael is the recommended location for your event lodging. This hotel is conveniently located across the courtyard to the hospital’s meeting spaces. There is no room block contracted by the ECDGA for this hotel; therefore, we recommend booking your room as soon as possible to ensure room availability. Follow the hotel’s website for more information and to make a reservation. http://www.rafaelhotel.it/en

Additional Visit Information

Attendee Experiences

“It was amazing to witness the dedication and commitment that these doctors displayed regarding the diagnosing, treatment, and research efforts as it relates to ECD. I am grateful for this rare opportunity.”

– Leretha R. Thomas, ECD Caregiver

“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

6th Annual International ECD Patient & Family Gathering
November 16, 2018 | Orlando, FL

A total of 109 patients, family members, and physicians, from eight countries attended the 2018 Patient & Family Gathering.

Attendees learned about the drug trial process, how to manage multiple medications, how to care for yourself with nutrition and exercise, and more about care management. Please see the event materials below for more on this successful event. Thank you to all participants!

Presentation Slides

Reception Photos

The following photos were taken during the ECD Patient & Family Gathering Reception with medical professionals and ECD families on November 15, 2018 at the Orlando Health Regional Medical Center. Thank you to all participants for attending and engaging with the community. You can find more photos on Facebook under the tag searches #ECDGA18 or directly in our ECDGA Facebook page.

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Patient Meeting Photos

The following photos were taken during the ECD Patient & Family Gathering meeting on November 16, 2018 the Orlando Health – Orlando Regional Medical Center. Thank you to all attendees for participating during the meeting and social times, allowing great support and connections within this community. You can find more photos on Facebook under the tag searches #ECDGA18 or directly in our ECDGA Facebook page. Please join us again on July 12, 2019 in Milan, Italy!

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5th Annual International ECD Patient & Family Gathering

October 27, 2017 | New York, NY

Thank you to the 150 participants for making this year’s ECD Patient Gathering a huge success! Patients, family members, nurses, research teams and numerous physicians attended the 2017 Patient & Family Gathering held in New York. Attendees were brought up-to-date on the latest research, treatments, and care management techniques, including the psychological affects of living with ECD. Please see the event materials below for more information.

Presentation Slides

The following presentations have been added in hopes that they will help patients, families, and physicians interested in learning more about ECD. The ECDGA is grateful for the efforts and contributions made by the medical community to improve care for ECD patients.

Presenter	Slides	Contact Information
Craig Blinderman, MD, MA, FAAHPM	Pain management in Erdheim-Chester Disease	Columbia University Medical Center/New York Presbyterian Hospital E-mail: cdb21@columbia.edu \| Telephone: 1.212.305.3071
Eli L. Diamond, MD	ECD and the Brain Slides coming soon	Memorial Sloan-Kettering Cancer Center E-mail: diamone1@mskcc.org \| Telephone: 1.212.639.5122
Mary Elizabeth Davis, RN, MSN, AOCNS and Allison Hyde, RN, BSN	Demystifying the Clinical Trial See also printable ECD Studies & Trials Guide	Memorial Sloan Kettering Cancer Center Davis E-mail: davism@mskcc.org \| Telephone: 1. 646.942.0189Hyde Telephone: 1.916.505.1517
Ronald Go, MD	ECD Treatment Options	Mayo Clinic E-mail: go.ronald@mayo.edu \| Telephone: 1.507.284.5362
Mark Heaney, MD	An Overview of ECD	Columbia University Medical Center E-mail: Mlh2192@cumc.columbia.edu \| Telephone: 1.646.317.5077
Filip Janku, MD, PhD	ECD and Clinical Trials See also printable ECD Studies & Trials Guide	The University of Texas MD Anderson Cancer Center E-mail: fjanku@mdanderson.org \| Telephone: 1.713.563.0803
Meenal Kheterpal, MD	Skin Care Pearls ECD Management	Memorial Sloan Kettering Cancer Center Telephone: 1.914.367.7295
Andy J. Roth, MD	Psychological Effects on the Chronically Ill and Their Families	Memorial Sloan Kettering Cancer Center Telephone: 1.646.888.0024

Reception Photos

The following photos were taken during the ECD Patient & Family Gathering Reception with medical professionals and ECD families on October 26, 2017 in New York, NY. Thank you to all participants for attending and engaging with the community. Please join us again on November 15, 2018 in Orlando!

Patient Meeting Photos

The following photos were taken during the ECD Patient & Family Gathering meeting on October 27, 2017 in New York, NY. Thank you to all attendees for participating during the meeting and social times, allowing for great support and connections within this community. Please join us again on November 15, 2018 in Orlando!

4th International ECD Patient & Family Gathering
September 16, 2016 | Paris, France

A total of 63 patients and family members, and numerous physicians, from 17 different countries attended the 2016 Patient & Family Gathering. Attendees learned about current ECD studies and trials, how ECD can affect various organs of the body, pain management, scans, and care management. Please see the event materials below for more on this successful event.

2016 Event Materials

Presentations

The following presentations were included in the 2016 Patient & Family Gathering agenda in Paris, France. Visit the ECD Global Alliance YouTube channel for all published ECD related videos.

Presenter	Presentation Slides	Presentation Video
Stéphane Barete, MD	ECD Skin Issues	ECD Skin Issues
Giulio Cavalli, MD	ECD Lung & Heart Issues	ECD Lung & Heart Issues
Carine Courtillot, MD	Endocrinological Consequences of ECD	Endocrinological Consequences of ECD
Eli Diamond, MD (Presented by Juvianee Estrada-Veras, MD)	ECD Neurological Issues	ECD Neurological Issues
Benjamin Durham, MD	ECD Studies at MSKCC	See ECD Studies & Trials Panel
Philippe A. Grenier, MD	CT of Thoracoabdominal Involvement in Erdheim-Chester Disease	See ECD Scan and Radiology Panel.
Filip Janku, MD, PhD	Importance of Clinical Trials	See ECD Studies & Trials Panel
Kenneth L. McClain, MD, PhD	ECD Studies & Trials – Texas Children’s Cancer Center	See ECD Studies & Trials Panel
Augusto Vaglio, MD, PhD	Renal & Ureteral Involvement in ECD	Renal & Ureteral Involvement in ECD
Panel participants:Achille Aouba, MD, PhD, Lorenzo Dagna, MD, Juvianee Estrada-Veras, MD, Julien Haroche, MD, PhD, Filip Janku, MD, PhD, Kenneth McClain, MD PhD, Augusto Vaglio, MD, PhD	ECD Studies & Trials Panel	ECD Studies & Trials Panel
Panel participants:Marcus Chen, MD, Phillippe Cluzel, MD PhD, Phillippe Grenier, MD, Phillippe Maksund, MD	ECD Scan and Radiology Panel	ECD Scan and Radiology Panel
Physician panelists answer patient questions regarding Erdheim-Chester Disease.	Doctor Question & Answer Panel	Doctor Question & Answer Panel

Photos

2015 Event Materials

Presentations

Please see the following presentations from the 2015 Patient Gathering in Houston, TX.

Presenter	Presentation(s)	Videos
Timothy Craig Allen, MD, JD	Social Media in the Rare Disease World	Not available.
Naifa Lamki Busaidy, MD	ECD & Hormones	Not available.
Jean Campbell	Power of Patient Groups	The Power of Patient Groups
Susan Y. Chon, MD	Not available.	ECD and Skin
Maxine Grace de la Cruz, MD	ECD & Pain Management	ECD and Pain Management
Eli L. Diamond, MD	Braf Negative; ECD & Brain	Not available.
Nancy K. Feeley, RN, MS, CRNP	ECD & Exercise	ECD and Exercise
Horiana Grosu, MD	ECD & Lungs	ECD and the Lungs
Saamir Hassan, MD	ECD & Heart	ECD and the Heart
Filip Janku, MD, PhD	Importance of Clinical Trials	The Importance of Clinical Trials
Cynthia Kizer, RN, BSN	Insurance Appeals	ECD and Insurance Approval Issues
Chaplain Richard T. Maddox, BCC	Facing Key Spiritual Care Issues	Facing Key Spiritual Issues
Kenneth L. McClain, MD, PhD	ECD101	ECD 101
Omar Ozgur, MD	ECD & Eyes	ECD and Eyes
Susan Robertson, PhD, OTR/L, FAOTA	Financial Stability & SSI	ECD and Social Security Applications
Robert Zieve, MD	Integrative Medicine	Not available.