4° Raduno internazionale dei pazienti e delle famiglie ECD Parigi, Francia

Posizione: Parigi, Francia

Un totale di 63 pazienti e familiari e numerosi medici provenienti da 17 paesi diversi hanno partecipato al Patient & Family Gathering 2016. I partecipanti hanno appreso gli studi e le sperimentazioni in corso su ECD, il modo in cui ECD può influenzare i vari organi del corpo, la gestione del dolore, le scansioni e la gestione dell “assistenza. Per maggiori informazioni su questo evento di successo, consulta il materiale dell” evento qui sotto.

Materiali dell’evento 2016

Presentazioni

Le seguenti presentazioni sono state incluse nell’agenda del Patient & Family Gathering 2016 a Parigi, Francia. Visita il canale YouTube di ECD Global Alliance per tutti i video pubblicati relativi a ECD.

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

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Materiali dell’evento 2015

Presentazioni

Consulta le seguenti presentazioni del Patient Gathering 2015 a 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.

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