Erdheim-Chester Disease Global Alliance

Annual Patient & Family Gathering History

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 the Patient and Family Gathering (PFG) 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.

Looking back at previous years’ videos and presentations will help you learn more about this event. Please find these listed below for your convenience and feel free to reach out with any questions. (All ECDGA videos can also be found on our YouTube Channel.)

2023 International ECD Patient & Family Gathering

April 28, 2023| Rochester, MN

Presentations

Presenter	Presentation Slides	Presentation Videos
Ronald Go, MD Guarav Goyal, MD		Welcome
Brewer, Kathy, Founder, ECDGA	ECDGA Successes	ECDGA Successes
Hendrie, Paul, MD, Board Member	Focus on the Future	Focus on the Future
Jacobsen, Eric, MD	Erdheim-Chester Disease: Overview of Biology, Clinical Presentation, and Management	Erdheim-Chester Disease: What Do We Know a Century Later
Abeykoon, Jithma, MD	Prescriptions for a Rare Disease. Is There a Cure?	Prescriptions for a Rare Disease Video
Diamond, Eli, MD	A Balancing Act: Treating Disease and Side Effects	Treating the Disease and the Side Effects: A Balancing Act
Tobin, Oliver, MD	It’s Not All in the Head: ECD and the Brain	It’s Not All in the Head: ECD and the Brain
Shekhar, Skand, MD	Hormonal Woes – Finding the Right Balance	Hormonal Woes Finding the Right Balance
D’Andre, Stacy, MD	Integrative Oncology	Integrative Oncology
O’Brien, Kevin, NP	Depression and Anxiety in Serious Chronic Illness	Depression and Anxiety in Serious Chronic Illness: Diagnosis and Management
Nielsen, Alice		Alice Nielsen – Patient Story
Atnip, Barry		Barry Atnip – Patient Story
Abeykoon, Jithma, MD Diamond, Eli, MD Goyal, Guarav, MD Hendrie, Paul, MD		Questions & Answers with the Experts
Young, Angela, LSW Blackmer, Emily, MSW Bargfrede, Melissa, MBA	Patient Support Panel Discussion	Cancer Patient Navigator, Social Worker, and Financial Counselor Panel

2022 Regional Patient & Family Gatherings

Find recordings on our YouTube channel in our Regional Gathering Playlist.

May 23, 2022 • Birmingham, AL

August 12, 2022 • La Jolla, CA

October 7, 2022 • Cincinnati, OH

7th Annual International ECD Patient & Family Gathering

July 12, 2019 | Milan, Italy

The event held in Europe allowed for the ECDGA to reach more patients internationally with information pertinent to their ongoing care and support from the community. Attendees came from eight countries to hear from the experts in this field and meet others closer to home for the first time ever. Sixty-eight attendees participated in the event.

“Fantastic contact with other patients.” – Susie Smythe, Caregiver
“[The ECDGA] has helped me down the medicine path and with support.” – ECD Patient in Attendance

Presentation Videos

Presenter	Videos (Including Slides)	Contact Information
Lorenzo Dagna, MD (Host)	Welcome to Italy	E-mail: lorenzo.dagna@hsr.it
Moderator: Ronald Go	Ask the Experts!
Stéphane Barete, MD, PhD	ECD and Skin Issues	E-mail: stephane.barete@aphp.fr
Carine Courtillot, MD	Endocrine Manifestations in ECD	E-mail: carine.courtillot@aphp.fr
Lorenzo Dagna, MD	ECD & Drug Management	E-mail: lorenzo.dagna@hsr.it
Eli L. Diamond, MD	ECD and the Brain	E-mail: diamone1@mskcc.org
Eli L. Diamond, MD	Patient-Reported Outcomes from the ECD Registry	E-mail: diamone1@mskcc.org
Julien Haroche, MD, PhD	Organ Involvement in ECD	E-mail: julien.haroche@aphp.fr
Mark Heaney, MD, PhD	Mutations in ECD	E-mail: Mlh2192@cumc.columbia.edu
Filip Janku, MD, PhD	Clinical Trials in ECD	E-mail: fjanku@mdanderson.org
Roei Mazor, MD	Daily Care	E-mail: hematologyrec@assuta.co.il
Augusto Vaglio, MD, PhD	Renal and Ureteral Involvement in ECD	E-mail: augusto.vaglio@virgilio.it

Reception & Meeting Photos

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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

Presenter	Videos	Slides
Eli L. Diamond, MD	ECD Patient Registry	Diamond_ECD Registry
Rebecca Donnenberg, RD CSO, LD/N	Nutrition and Erdheim-Chester	Donnenburg_Nurtition
Ronald S. Go, MD	Treatment Options for ECD	Go_Treatment Options
Fady Hannah-Shmouni, MD, DABIM, FRCPC	Endocrine Dysfunction in Erdheim-Chester	Hannah-Shmouni _ Endocrine Dysfunction
Eric Jacobsen, MD, PhD	The Drug Trial Process	Jacobsen_The Drug Process
Cassie Nguyen, PharmD, BCOP	Drug Management for ECD	Nguyen_Drug Management
Collen Scordato, DPT, Cert. MDT (with Patricia Bobryk, MHS, PT, MSCS, ATP)	Exercise and Physical Therapy	Scordato_Exercise

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 on 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 on 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 effects 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 the printable ECD Studies & Trials Guide	Memorial Sloan Kettering Cancer Center Davis E-mail: davism@mskcc.org \| Telephone: 1. 646.942.0189 Hyde 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 the 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.