Erdheim-Chester Disease Global Alliance

Annual International ECD Medical Symposium

During this annual event, medical professionals from around the world gather to share scientific findings, patient outcomes, and case studies related to Erdheim-Chester Disease. Time is also allowed for structured and informal discussions encouraging collaboration and support across specialties and institutions.

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7th Annual International ECD Medical Symposium
Milan, Italy
July 10 – 11, 2019

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

Deadlines & Abstract Submission

ACTIVITY	DEADLINE/NOTIFICATION DATE
Registration open	January 2019
Symposium abstracts due *Download submission form here.*	April 1, 2019
Notification of abstract approval	May 13, 2019
Care Center questionnaire form due	June 1, 2019
Care Center meeting RSVP	June 1, 2019
Study & Trial updates due	June 15, 2019
Care Center Meeting & Social	July 10, 2019
Medical Symposium	July 11, 2019
Patient Meeting	July 12, 2019

Detailed Schedule of Events

All medical professionals interested in learning more about ECD, collaborating with other professionals, or meeting ECD patients and their families are encouraged to attend the following events. The $300 registration fee for the 3-day event includes access to all conference sessions, breakfast, 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

EVENT	DATE/TIME	DETAILS
Care Center Meeting	July 10, 2019 3 – 5 p.m.	This meeting is open to any Care Center physician and those interested in becoming an ECD Care Center.
Medical Social	July 10, 2019 6 p.m.– 8 p.m.	This social gathering will be an opportunity for fellowship among the Medical Symposium attendees. Hor d’oeuvres will be served.
ECD Medical Symposium	July 11, 2019 9 a.m.– 5 p.m. (Registration 8 – 9 a.m.)	Presentations will be provided by ECD-knowledgeable physicians on the basic science of the disease, treatment experience, comprehensive organ involvement, and case studies. To submit your abstract for presentation, download your form HERE.
Welcome Social with Families	July 11, 2019 6 p.m.– 8 p.m.	All event attendees are welcome to attend this event to encourage connections between the patients and medical professionals. Hor d’oeuvres will be served.
ECD Patient & Family Gathering	July 12, 2019 9 a.m.- 5:30 p.m. (Registration 8 – 9 a.m.)	Medical speakers will present the latest regarding ECD care to families and other treating physicians.

Conference Hotel Information

Hotel Rafael is the recommended location for your event lodging. This hotel is conveniently located across the courtyard from 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 reservation. http://www.rafaelhotel.it/en

Additional Visit Information

Previous Events

6th Annual ECD Medical Symposium
Orlando, FL
November 15, 2018

“[The ECD Global Alliance has helped me and my patients by] bringing experts together to make collaborative progress.” – Ronald S. Go, MD, 2018 Attendee

Presentations

Reception Photos

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Medical Meeting Photos

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2017-MS-Group-Photo_All-attendees-300x200 5th Annual ECD Medical Symposium
New York, NY
October 25 – 26, 2017

Presentations

The following presentations have been added in hopes that it will help other physicians and researchers that are 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	Presentation Slides
Ankush Bhatia, MD	Single-agent dabrafenib for BRAFV600E-mutated histiocytosis
Riccardo Biavasco, MD	BRAFV600E expression in hematopoietic progenitors leads to myeloid skewing and histiocytosis
Pascale Chasseur, MD	A cytologic diagnosis of BRAFV600E Erdheim-Chester disease on pericardial fluid
Marina Ferrarini, MD	3-D culture of BRAF and KRAS-mutated Erdheim-Chester disease tissues: impact of kinase inhibitors
Aaron Goodman, MD	Genomics of Erdheim Chester Disease: Implications for Precision Treatment with Targeted Therapy
Gaurav Goyal, MBBS	Efficacy of Biologic Agents in the Treatment of Erdheim-Chester Disease
Gaurav Goyal, MBBS	Increased prevalence of myeloid neoplasms in patients with Erdheim-Chester disease
Julien Haroche, MD, PhD	BRAF V600E mutation is associated with a cardiac and neurological phenotype in Erdheim-Chester disease: results from a 165-patient cohort
Filip Janku, MD, PhD	Clinical molecular profiling of archival tumor tissue and cell-free DNA from patients with Erdheim-Chester disease
Augusto Vaglio, MD	Renal and ureteral involvement in Erdheim-Chester disease: analysis of a single centre cohort

Photos - Reception

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!

Photos - Medical Meeting

The following photos were taken during the ECD Medical Symposium on October 27 in New York, NY. Thank you to all participants and speakers for a fulfilling and enlightening experience at this event. Please join us again on November 15, 2018 in Orlando! Please also see the Patient & Family Gathering page for more.

4th Annual Medical Symposium Attendees
4th Annual ECD Medical Symposium
Paris, France
September 15, 2016

Summary of Presentations

Presentations

The following presentations were given at the 2016 meeting. Visit the ECD Global Alliance YouTube channel for all published ECD related videos.

Presenter	Presentation Slides	Videos
Corrado Campochiaro, MD	Management of ECD Symptoms and Side Effects of Treatments	Management of ECD Symptoms and Side Effects of Treatments
Giulio Cavalli, MD	Adult Onset (Infratentorial) Leukoencephalopathy as Presenting Manifestation of Erdheim-Chester Disease	Adult Onset (Infratentorial) Leukoencephalopathy as Presenting Manifestation of Erdheim-Chester Disease
Carine Courtillot, MD	Endocrine manifestations in Erdheim-Chester disease	Endocrine manifestations in Erdheim-Chester disease
Benjamin Durham, MD	Insights into the Cell-of-Origin of the Histiocytoses Using Patient-Derived Xenograft Murine Models	Insights into the Cell-of-Origin of the Histiocytoses Using Patient-Derived Xenograft Murine Models
Marina Ferrarini, MD	Tailoring Treatment for Erdheim-Chester Disease: Focus on ECD	Tailoring Treatment for Erdheim-Chester Disease: Focus on ECD
Ronald Go, MD	Efficacy of Cladribine (2-CdA) in the Treatment of Erdheim-Chester Disease (ECD)	Efficacy of Cladribine (2-CdA) in the Treatment of Erdheim-Chester Disease (ECD)
Filip Janku, MD, PhD	Encouraging activity of MEK inhibitor trametinib in patients with Erdheim-Chester disease irrespective of BRAF mutation status Clinical Molecular Profiling to Detect Targetable Alterations in Archival Tumor Tissue and Cell-free DNA from Patients with Erdheim-Chester Disease	Encouraging activity of MEK inhibitor trametinib in patients with Erdheim-Chester disease irrespective of BRAF mutation status Clinical Molecular Profiling to Detect Targetable Alterations in Archival Tumor Tissue and Cell-free DNA from Patients with Erdheim-Chester Disease
Javier Martin, MD, PhD	Future Genetic Studies in Erdheim-Chester disease – GWAS Study	Future Genetic Studies in Erdheim-Chester disease – GWAS Study
Kenneth McClain, MD, PhD	Elevated CSF Osteopontin and Circulating Cells with BRAF Mutations in Patients with Langerhans Cell Histiocytosis-Associated Neurodegeneration -A Model for ECD?	Elevated CSF Osteopontin and Circulating Cells with BRAF Mutations in Patients with Langerhans Cell Histiocytosis-Associated Neurodegeneration -A Model for ECD?
Augusto Vaglio, MD, PhD	MRI evidence of cardiac involvement in Erdheim-Chester disease	MRI evidence of cardiac involvement in Erdheim-Chester disease